General Health Info Archives

Cancer is a broad category of diseases characterized by abnormal and uncontrolled cell growth.  There are more than 100 types of cancers and the disease can occur almost anywhere in the body. More than a million people are diagnosed each year in the United States with some form of cancer.  Millions more find themselves in the role of care partner or advocate. If you are one of them, do not be overwhelmed.

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A Consumer’s Guide to Drug Discounts

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This blog was originally published by Everyday health By Debra Fulghum Bruce, PhD, on April 8, 2019, here.

Sponsored by GoodRx

There are ways that you can minimize the effect that the accelerating prescription drug crisis has on your healthcare.
Ralf Hiemisch/Getty Images

Have you ever had to choose between buying groceries or paying the rent and filling a drug prescription? Have you or has someone you know ever skipped taking medication because of the cost? You’re not alone. Millions of Americans are feeling the burden of increasingly costly prescription drugs, and they’re making choices that could jeopardize their health.

Today, the amount consumers have to pay out of pocket for prescribed drugs is rapidly escalating, from about $25 billion in 2000 to a projected $67 billion in 2025. (1) To make matters worse, more than 8.8 percent of American adults, or roughly 28.5 million people, do not have health insurance and must pay for all prescription medications themselves. (2)

But there are ways that you can minimize the effect that the accelerating prescription drug crisis has on your healthcare. This guide to drug pricing and discounts provides the answers to common questions and offers practical information that every consumer needs to know.

Why Are Prescription Drug Prices So High?

Did you know that Americans pay the highest costs for prescription medications in the world? (3) You can partly attribute the exorbitant prices to an intricate and extensive drug research and development (R&D) and approval process, along with an equally complex healthcare system. (4)

No doubt, we have benefited from innovations in the management of diseases for which there were few or no treatment options before. But opponents of the pharmaceutical companies argue that just a small percentage of the drug companies’ costs are used for R&D, with most of the money spent on administration and brand-name drug marketing.

Drug companies don’t tell the whole story behind the rising cost of prescriptions. There are third-party administrators known as pharmacy benefit managers (PBMs), who are paid to negotiate prices between pharmacies and large insurers. These PBMs charge pharmacy providers either a percentage or a flat fee for every prescription filled, which contributes to higher drug prices. (5)

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How Can You Save Money on Medication?

Consumers have options when it comes to getting the lowest prices on prescription drugs.

First, if you aren’t shopping around for medications at local pharmacies, using online coupons, or joining buyers’ clubs at drugstores, you’re probably paying way too much.

Just because your pharmacist quotes you a price does not mean that’s the lowest price for that prescription. Comparison shopping for prescription medications can be as quick and easy as following the helpful tips below, reviewing a few websites, and printing some money-saving coupons.

12 Ways You Can Cut Your Drug Costs

These 12 surefire tips will help you save on prescription medications so that you can put the extra funds to other important uses.

1. Try Generic Drug Options

More than 80 percent of all drugs today are generics, which use the same active ingredients as brand-name medicines and work the same way but tend to cost a lot less than their pricey brand-name counterparts.

The cost-saving news is that manufacturers of generic drugs do not have to repeat the animal and clinical (human) studies that were required of the brand-name medicines to demonstrate safety and effectiveness. Also, the competition among multiple companies producing a generic version of a drug helps keep the prices low for consumers.

According to the Food and Drug Administration (FDA), to gain approval a generic drug must be the same as the brand-name product in the following ways:

  1. Able to reach the required level in the bloodstream at the correct time and to the same extent
  2. Manner in which it is taken (whether inhaler, liquid, or pill)
  3. Strength
  4. Testing standards
  5. Use and effects
  6. Working ingredients

Generics may differ from brand-name counterparts in terms of other characteristics that don’t affect the drug’s performance or safety, like flavorings.

What you should do Talk to your physician and pharmacist about generic equivalents of your brand-name drugs and consider switching.

2. Search for Discount Coupons Online

A simple Google search of your prescription drug, over-the-counter medicine, or healthcare supplies will bring up pages of websites offering money-saving coupons.

Drug coupons cannot lower your copay, but your pharmacist may apply the coupon to your drug purchase to lower the price.

Scroll through the available sites online to find rebates for your medicine, too. Because pharmacists may run prescriptions through insurance first, make sure the pharmacist is aware of the discount coupon or rebate before you pay the final cost.

What you should do Before you head to the pharmacy to fill a prescription, do a quick Google search to check for money-saving coupons and rebates.

3. Use an App to Compare Local Drug Prices

There are several websites and mobile applications that can help you find the best price available for a prescription drug.

One of the most widely used is GoodRx, which allows you to comparison shop and get coupons toward medications. GoodRx collects and compares prices and discounts that you didn’t know existed from more than 70,000 U.S. pharmacies, including CVS, Rite Aid, and Walgreens. (6) It allows you to print free discounted coupons or send them to your phone by email or text message. You can then use a GoodRx discount instead of your health insurance or Medicare Part D or Advantage plan if the cost is lower than your copay.

When you go to GoodRx.com, they will ask for the name of the drug, the dosage, the number of pills, and your zip code. Click the “Find the Lowest Price” button. You will see what you might pay at different chain pharmacies with a GoodRx discount coupon or voucher. You can then print or download the generated coupons and vouchers to your smartphone and show your pharmacist to get savings on your drug purchase. (7,8)

Similarly, Blink Health lets users browse local prices by simply searching for a prescription drug’s name. It also offers the option of having your medication delivered or ready for pickup. Another online and mobile service is OneRx, which lists drug prices in your area and offers discounts to consumers using the OneRx card.

Rx Saver is a popular and easy-to-use app and program. Here you can search for prices on brand-name and generic drugs. Their coupons can be used an unlimited number of times at retail pharmacies such as Walgreens and CVS.

Other websites and mobile apps that offer drug coupons and rebates include ScriptSave WellRx, Easy Drug Card, and Search Rx.

What you should do Check out these and other no-cost prescription pricing services to see what pharmacies in your area charge for your medications.

4. Join Your Pharmacy’s Prescription Club

No insurance or not enough coverage? You can find in-store pharmacy prescription clubs at many drugstores. These money-saving programs can lower drug and supply prices.

Also, the in-store programs provide up to an 85 percent savings on thousands of prescriptions, including commonly prescribed generic medications for heart health, diabetes, asthma, mental health issues, women’s health, gastrointestinal health, and other conditions. (9)

While these savings clubs are not health insurance, they can save you money at the pharmacy. (10)

What you should do Compare different in-store pharmacy prescription clubs to get the best prices when checking out. In-store pharmacies at retailers like Walgreens and Kmart also offer prescription clubs.

5. Shop Local or a Preferred Pharmacy Network

Independent pharmacies may beat major chain drugstores, supermarkets, and big box discounters on price — and by an impressive margin. Independents can also easily beat membership warehouses and clubs.

In contrast, the preferred pharmacy network is a group of chain pharmacies that likely give insurance plans a larger discount than other pharmacies.

The point is that drugstores have different prices — they can vary by hundreds of dollars — so be sure to ask ahead before you pick a specific pharmacy.

What you should do Call your local and preferred retail pharmacies before filling your prescription to find the lowest prices.

6. Use a Verified Internet Pharmacy

Verified internet pharmacies are those that have passed stringent reviews by the National Association of Boards of Pharmacy (NABP). These pharmacies often include “.pharmacy” in their URLs to show that they are in compliance with the NABP, although some verified pharmacies are .coms or .orgs. They also carry the designation VIPPS, for Verified Internet Pharmacy Practice Site.

While verified internet pharmacies have passed inspection and are deemed safe, be careful not to use a rogue internet pharmacy that is not verified. Check your internet pharmacy against the Find a Safe Site list to buy safely.

In a revealing 2018 study, Consumer Reports sent secret shoppers to 150 pharmacies in six cities across the country to ask for the retail cash prices for a one-month supply of five commonly prescribed drugs — essentially the prices someone without insurance might pay. The widespread range in prices they uncovered was shocking. While the five-drug “basket” cost was just $66 at the verified internet pharmacy HealthWarehouse.com, two national chain retailers had prices closer to $900 for the five drugs. (7)

What you should do It pays to shop around, and don’t forget to check internet pharmacies like HealthWarehouse.com for greater savings.

7. Use Mail Order for Medications and Supplies

Many pharmacies offer online ordering for drugs, diabetic supplies, over-the-counter medicines, hair supplies, and even pet medications. And you don’t have to have insurance. After placing your order, you will receive the drugs and supplies in the mail. Make sure the pharmacy is VIPPS accredited and certified. Your doctor will send the Rx by e-prescription to the proper phone number.

What you should do Generally, it will take one to five business days to process your mail order prescription, so it’s important to plan ahead. (11)

8. Get Free or Low-Cost Birth Control Online

Not only can you get great prices on medications online, several newer websites offer free or low-cost birth control to women in many states. Planned Parenthood Direct, Nurx, Prjkt Ruby, and Maven Clinic offer telehealth services, virtual clinics, and prescription drugs delivered right to your door — and no insurance is needed.

What you should do Explore telehealth services and virtual specialty clinics that can save you time and money on birth control and other necessary medications.

9. Talk Openly With Your Doctor

Be vocal with your doctor about any financial issues you may have, and be sure to try one or more of the following five things at your next office visit:

  • Ask your doctor for free samples or coupons. Doctors usually have samples and coupons given to them by drug reps. It doesn’t hurt to try a free sample pack before filling a pricey prescription to make sure this drug will work for you.
  • Ask your doctor for a 90-day supply. This gives you one copay every three months instead of one every month.
  • Ask about mail order. If your drug plan has a mail-order option, you may be able to get the 90-day supply of medications at an even lower cost.
  • Ask about pill-splitting. Your doctor can prescribe a higher dose of medicine at the same price of the lower dose. You can split the drug in half or fourths to save. Scored pills are easier to split, but use a pill splitter (usually between $3 and $9 at most pharmacies) to avoid crushing the medication.
  • Ask for an exception. If you and your doctor can’t find an affordable option together, speak with your insurer about making a formulary exception and providing coverage for your drug. The formulary is a list of prescription drugs covered by a prescription drug plan or another insurance plan offering prescription drug benefits. (12,13) Your doctor will most likely need to submit a supporting statement, detailing that your drug is medically necessary and that any alternatives would have an adverse effect.

What you should do Be open and persistent. If your insurer denies your request for an exception, file an appeal. This requires that you work with your doctor to submit an application or letter of appeal.

10. Consider Patient Assistance Programs

Patient assistance programs (PAPs) are typically offered by pharmaceutical companies to provide free or low-cost prescription drugs to patients who lack health insurance or prescription drug coverage. You will need to fill out an application on the drug company’s website with your financial information. Your doctor may need to provide information about your prescribed medications.

The drug company will review the application and tell you if you’re eligible for assistance. If approved, many companies will ship a supply of the drug to your home or your doctor’s office. Your doctor will need to place a new order several weeks before the supply runs out.

What you should do Check out RxAssist.org, an online database of drug companies offering patient assistant programs that provide free or affordable drugs and copay assistance. (14)

11. Learn More About Medicare Part D

If you are 65 years or older and on Medicare Part D or Medicare Advantage, it’s important to understand how to get discounts on drugs. (15,16) Medicare Part D is an optional program to help Medicare beneficiaries pay for prescription drugs. Medicare Advantage Plan is a type of Medicare health plan offered by a private company that contracts with Medicare.

The insurer’s formulary of drugs that they cover can change at any time, so be sure to check the prescription medications you take on the Medicare.gov site to find the best Part D plan that works for you. (17)

While some people are able to use discounted coupons with Medicare Part D, most cannot unless they’re paying cash only. Of course, if you have a coupon for a drug not covered by your prescription drug plan, you can use this to lower your costs. (18,19)

What you should do Take advantage of online education such as the Drugs.com Medicare Support Group to ask questions, share opinions, and stay up with the latest news. (20) Also, check the Medicare.gov site for more understanding on how Part D works with other insurance.

12. Get It for Free, if You Can

Some large supermarket chains, including Publix, Harris Teeter, Schnucks, Price Chopper, Walmart, Sam’s Club, Costco, and ShopRite, will fill basic antibiotic prescriptions like amoxicillin for free. Supermarket pharmacies may give prenatal vitamins, metformin, antibiotics, children’s vitamins, and other commonly taken medications and supplements for free if you have a valid prescription. These meds and antibiotics are free for as long your doctor prescribes them. You just have to ask. (21)

What you should do You never know until you ask at the pharmacy to find out what drugs they provide customers for free. So be vocal!

Glossary Of Terms

When it comes to getting the best prescription drug prices, being an informed consumer is key. Knowing your cost-cutting options is more than half the battle, but it’s also important to understand many of the common terms used by drug companies, insurers, and pharmacies.

Here is a glossary of terms that you should familiarize yourself with.

Brand-name drug

A drug marketed under a proprietary, trademark-protected name.

Copay

A copay is a set rate that you pay for healthcare services and prescriptions at the time of care. For example, you may have a $25 copay every time you see your primary care physician (PCP). You may have a smaller copay for prescription drugs and a higher copay for the hospital emergency room.

Coinsurance

This is a percentage of a medical charge that you must pay, with the remainder paid by your health insurance plan, after your deductible has been met.

Deductible

The amount of money that the insured must pay before an insurance company will pay a claim.

Donut hole

This coverage gap with Medicare Part D means that after you and your drug plan have spent a certain dollar amount for prescription drugs, you have to pay all costs out of pocket for your prescriptions up to a yearly limit. Once you have spent up to the yearly limit, your coverage gap ends and your prescription drug plan helps pay for covered drugs again.

Drug coupon

Offered by drug manufacturers to consumers to reduce the price of their prescription drugs.

Drug rebates

Used by payers to reduce premiums and out-of-pocket expenses.

U.S. Food and Drug Administration (FDA)

The FDA is a federal government agency that is responsible for protecting the public health by ensuring the safety, efficacy, and security of human and veterinary drugs, biological products, and medical devices; and by ensuring the safety of the nation’s food supply, cosmetics, and products that emit radiation.

Generic drug

Drugs that use the same active ingredients as brand-name medicines and work the same way. Generic drugs are the same as brand-name drugs in dosage, safety, strength, how it is taken, quality, and intended use.

Mail order

Mail order services allow individuals to receive prescriptions conveniently through the mail.

Medicare Advantage Plan

A type of Medicare health plan offered by a private company that contracts with Medicare.

Medicare Part D

An optional program to help Medicare beneficiaries pay for prescription drugs.

Over-the-counter drug

A medicine that does not require a prescription.

Patient assistance programs (PAPs)

Offered by pharmaceutical companies, these programs provide free or low-cost prescription drugs to patients who lack health insurance or prescription drug coverage.

Pharmacy’s prescription club

A money-saving program that can lower drug and supply prices for people who don’t have insurance.

Preferred pharmacy network

A group of pharmacies that give insurance plans a larger discount.

Premium

A monthly payment you make to your health insurance carrier. Like any membership, you pay the premium each month even if you don’t use it. If you don’t pay, you will lose coverage.

Telehealth

Encompasses a wide range of technologies to deliver virtual medical and healthcare services.

Third party administrators (TPAs)

Also called pharmacy benefit managers (PBMs), they are paid to negotiate prices between pharmacies and large insurance companies.

Verified internet pharmacy

Online pharmacies that have passed rigorous reviews by the National Association of Boards of Pharmacy (NABP). Also referred to as VIPPS-Accredited.

A Patients’ Bill of Rights for Prescription Drugs

If you’re a patient, it’s important to understand the guarantees that you have in the healthcare system. This Patients’ Bill of Rights provides you with specific facts and recommendations on how to safely cut costs on prescription drugs.

  1. You have the right to safe, effective, and affordable medication. When it comes to affordability, Sara Rogers, PharmD, the director of clinical affairs at the American Society of Pharmacovigilance, says patients should consider using online tools and apps to identify the lowest price. You can then print or download the coupons and vouchers to your smartphone and show them to your pharmacist to save money.
  2. You have the right to pay less for prescription medications, using discounted coupons, rebates, and vouchers. Check one of the prescription pricing websites and apps to compare the cost of drugs and to find money-saving coupons on commonly prescribed drugs. Another way to save money, according to Jenny Sippel-Tompkins, the director of pharmacy at AdventHealth Orlando, “is to choose a drugstore with an internal discount program, like a $4 generic program, with a pharmacist that you have a relationship with.”
  3. You have the right to appeal to your health insurance company should they deny coverage of a drug or medical device. A letter from your doctor is needed, but don’t back down if you are denied. You can even contact Congress by finding out who your U.S. representative and senator are.
  4. You have the right to shop around. Call different pharmacies and ask for the lowest prices on prescription drugs. If you need to go to a different pharmacy to save money on one or more drugs, do so.
  5. You have the right to ask your pharmacist for the very lowest prices on prescription drugs. Previously, “gag clauses” prohibited pharmacists from telling shoppers about less costly options. Legislation signed into law in 2018 prohibits gag clauses.
  6. You have the right to go generic. Harris H. McIlwain, MD, a board-certified rheumatologist and geriatrician with two pain clinics in Florida, recommends that patients ask for generic drug equivalents, which are virtually the same as the pricey brand-name drug but much cheaper.
  7. Dr. McIlwain says, “Patients have the right to ask their doctor for a higher dose. You can ‘split the pills’ into smaller doses, helping you to save money.”
  8. Instead of a 30-day supply, ask the pharmacist what the charge might be for a 90-day supply. According to Sippel-Tompkins, “if you have a $15 copay for a 30-day supply, it might be cheaper to purchase a 90-day supply and not bill the insurance company.” The more medicine you get, the cheaper the cost is per pill.
  9. You have the right to ask your chain supermarket pharmacist for free medications such as metformin and antibiotics and prenatal and children’s vitamins. Many large supermarket pharmacies, including Publix, Harris Teeter, Schnucks, Price Chopper, Walmart, Sam’s Club, Costco, and ShopRite, will provide these medications and vitamins free with a valid prescription, but not unless you ask.
  10. You have the right to contact drug manufacturers and ask about patient assistance programs (PAPs). There are many programs offering free or discounted drugs to those in financial need or even to the general public. Do some homework and find out if your medications are provided free by the pharmaceutical company. Start by locating the pharmaceutical company online. Do a search for the name of the company and the patient assistance programs offered. Fill out the online forms and have your doctor fax a letter of medical need. You should hear back quickly if you are accepted, and they will mail the medication directly to you or your doctor.

American Cancer Society Transportation Programs

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This resource was originally published by American Cancer Society here.

Rides Save Lives

Transportation shouldn’t be a roadblock to cancer treatment. Even with help from family and friends, sometimes patients have trouble getting every ride they need. We’re here to help. We have several transportation assistance programs all across the country and can connect you to the best option for your situation.

Call us for help finding a ride

1-800-227-2345

Get a Ride

Our Road To Recovery program provides rides to and from cancer-related medical appointments for patients who otherwise might not be able to get there. If you or someone you love needs a ride, we can help.  Based on eligibility and availability, we’ll match you with volunteer drivers,  transportation providers working with the American Cancer Society, or other local resources.  READ MORE.

Give a Ride

Our Road To Recovery volunteer drivers donate their time and the use of their vehicle so that patients can receive the life-saving treatments they need. Volunteers determine their own schedule based on availability and preference. Many say that they enjoy helping members of their community and benefit just as much as the patients do! READ MORE.

Patient Resources

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This resource was originally published by Pan Foundation here.

Patient Tools & Tips

Quick tips, factsheets, checklists and information to help you navigate the healthcare system. Learn More

PAN Glossary

A quick reference for some of the most commonly used terms in healthcare. Learn More

Need to find a particular disease assistance fund or covered medication?

Support Organizations

A number of outstanding organizations can connect you to a supportive patient community and provide services and resources related to your diagnosis. Learn More

Co-payment Assistance Organizations

If PAN is unable to assist you with the out-of-pocket costs of your critical treatment, another co-payment assistance organization may be able to help. Learn More

Travel Assistance for Medical Treatment

If PAN is unable to assist you with the out-of-pocket costs of your critical treatment, another travel assistance organization may be able to help. Learn More

Caregiver Resources

Many patients rely on a caregiver to get through a serious illness, and caregivers themselves often have questions and need support. These resources may be helpful to those assisting a loved one. Learn More

Government Resources

Looking for additional information? Many government health programs have extensive online tools and resources across a variety of health topics. Learn More

Clinical Trial Information

Interested in learning about clinical trials? Several government and nonprofit organizations provide information on and searchable databases of ongoing trials. Learn More

American Cancer Society Lodging Programs

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This resource was originally published by the American Cancer Society here.

American Cancer Society Patient Lodging Programs

Getting the best care sometimes means cancer patients must travel away from home. This can place an extra emotional and financial burden on patients and caregivers during an already challenging time. The American Cancer Society is trying to make this difficult situation easier for both cancer patients and their families through our lodging programs.

Hope Lodge

The American Cancer Society has a place where cancer patients and their caregivers can find help and hope when home is far away – an American Cancer Society Hope Lodge.

Each Hope Lodge offers cancer patients 18 and older and their caregivers a free place to stay when their best hope for effective treatment may be in another city. Currently, there are more than 30 Hope Lodge locations throughout the United States and Puerto Rico. Accommodations and eligibility requirements may vary by location. READ MORE.

 

Hotel Lodging

The American Cancer Society, in a cooperative effort with hotels across the country, provides overnight accommodations to cancer patients who must travel for outpatient treatment and need assistance with lodging.

The program is open to cancer patients of all ages, including pediatric patients accompanied by a parent, and patients traveling with children. All accommodations are provided based on eligibility requirements and are subject to availability and to restrictions imposed by the participating hotels. Requests for lodging are met on a first-come, first-served basis. READ MORE.

Telemedicine in Cancer Care

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This podcast was originally published by Cancer.net podcasts on October 23, 2018, here.

Telemedicine in Cancer Care, with Ana María López, MD, MPH, FACP, S. Joseph Sirintrapun, MD, FASCP, FCAP, Joseph A. Greer, PhD, and Karen E. Edison, MD

While most people may think of visiting a doctor to receive medical care, today, technology such as computers and smartphones can connect doctors and patients who are separated physically. This is known as “telemedicine.”

In today’s podcast, Dr. Ana María López, Dr. Joseph Sirintrapun, Dr. Joseph Greer, and Dr. Karen Edison will discuss their article from the 2018 ASCO Educational Book, “Telemedicine in Cancer Care,” including specific methods used in telemedicine, and the ways it helps bring high-quality medical care to people who might not otherwise be able to access this care.

Transcript:

[music]

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

While most people may think of visiting a doctor to receive medical care, today, technology such as computers and smartphones can connect doctors and patients who are separated physically. This is known as “telemedicine.”

In today’s podcast, Dr. Ana María López, Dr. Joseph Sirintrapun, Dr. Joseph Greer, and Dr. Karen Edison will discuss their article from the 2018 ASCO Educational Book, “Telemedicine in Cancer Care,” including specific methods used in telemedicine, and the ways it helps bring high-quality medical care to people who might not otherwise be able to access this care.

Dr. Lopez is the Vice Chair of Medical Oncology and Chief of Cancer Services at the Sidney Kimmel Cancer Center at Thomas Jefferson University. Dr. Sirintrapun is a pathologist and the Director of Pathology Informatics at the Memorial Sloan Kettering Cancer Center. Dr. Greer is the Clinical Director of Psychology and a research scientist in the Center for Psychiatric Oncology & Behavioral Sciences at the Massachusetts General Hospital Cancer Center. Dr. Karen Edison is the Philip C. Anderson Professor and Chair of the Department of Dermatology at the University of Missouri Health System, the Medical Director of the Missouri Telehealth Network, and the Director of the Center for Health Policy at the University of Missouri.

Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology.

ASCO would like to thank Dr. Lopez, Dr. Sirintrapun, Dr. Greer, and Dr. Edison for discussing this topic.

Dr. Lopez: Hello, welcome. My name is Dr. Ana María López. I’m a medical oncologist at the Sidney Kimmel Cancer Center at Thomas Jefferson University. Today we have a great panel on telemedicine and cancer care. I’m joined by Dr. Joseph Sirintrapun from Memorial Sloan Kettering Cancer Center, Dr. Joseph Greer of Massachusetts General Hospital, and Dr. Karen Edison from the University of Missouri Health System. In this podcast, we will be sharing some key points from our 2018 ASCO Educational Book article, “Telemedicine in Cancer Care.”

I’d like to start by giving a quick overview of telemedicine. Telemedicine uses telecommunication technology, like smartphones and computers, to provide clinical care, to really facilitate access to clinical care. These virtual visits can be in real-time, that is, almost like the face-to-face visits, and the patient and the physician use a video connection, which could be an app. But it could also be done by utilizing what’s called Store-and-Forward. So when medical reports are transmitted, when images, like radiographs, or sound recordings, which might be from an echo, or a stethoscope, could be transmitted, and these are interpreted at an asynchronous time from the clinical visit.

A combination of these approaches can often be used. And although these have been developed to care for patients at a distance, you can image that this can be very helpful in urban settings as well. Dr. Edison, can you tell us a little more about the history of telemedicine and how it might benefit patients with cancer?

Dr. Edison: Of course, Dr. Lopez. Telemedicine was initially created to assist with the care of astronauts while they were in space. But since devices like smartphones and computers with video capabilities have become so widespread and popular, doctors are now finding that they can use telemedicine to benefit patients who may not be able to otherwise make an in-person visit. Teleoncology, which is the cancer-specific form of telemedicine, was first used to help treat patients with cancer who live in rural areas. Teleoncology became a useful way for them to get care from their cancer team.

Dr. Lopez: Dr. Edison, do you think teleoncology as effective as seeing a cancer doctor in person?

Dr. Edison: Yes, and this has actually been studied. Telemedicine is as effective as in-person care, and both patients and doctors are highly satisfied using telemedicine. It also saves costs.

Dr. Lopez: What do you think these different types of telemedicine applications—you see these mHealth apps and wearables—can they help people with cancer?

Dr. Edison: Using telemedicine technologies like remote monitoring of cancer patients is a way to limit the time that patients with cancer spend in the doctor’s office or the hospital so that they can maximize their time closer to home enjoying their lives. With telemedicine a patient can follow up with me on wound care and talk about managing their symptoms without making a trip to the office. I can use telemedicine technologies to monitor my patients’ vital signs, like temperature and heart rate. There are also iPad-based group therapy sessions for young adults with cancer, and even a smartphone attachment that can use digital images to assess the cervix after an abnormal screening.

Dr. Lopez, you’ve done a lot research into using teleoncology for breast cancer care, can you tell us a little about your patients’ experiences using these methods?

Dr. Lopez: Sure. You know, teleoncology for breast cancer care, and for different aspects of cancer care, as you were mentioning, can really encompass the full spectrum of care from prevention, survivorship, to palliation.

There are data for the efficacy, for example, of telegenetics to assess hereditary cancer risk. And with the limited access for cancer geneticists in the country, this is really of great value to communities. There are approaches where telemedical services could be “bundled.” This could facilitate entry into breast cancer care by coordinating timely scheduling, sometimes even same-day. Telemammography, telepathology for the breast biopsy, and teleoncology consultation to discuss the plan of care, all really to facilitate the patient’s care.

At the end-of-life, the opportunity for tele-hospice can facilitate connection to care, timely assessment and intervention, and ease symptom management. A unique application for telemedicine that was pioneered at our institution in Arizona is for virtual rounds, to engage the patient, families, and caregivers in the transitions of cancer care that are critical for patient outcomes. Although most telemedicine approaches serve to bring the patient to the medical team, the concept of virtual rounds serves to bring the family and caregivers to the medical experience and to the discussions that can support care transitions. So as we consider how to care for patients, and to better care for cancer patients, we can also think if there is a technological approach that could make care easier. That might just be a telemedicine solution!

As an example, Dr. Sirintrapun at Memorial Sloan Kettering has used telemedicine to address an important approach in telepathology. Dr. Sirintrapun, can you tell us a little more about this?

Dr. Sirintrapun: Of course, Dr. Lopez. Pathology is the examination of tissue, the mainstay being under a microscope. As a pathologist, I diagnose cancer or determine if the tissue is free of disease. Pathology is constrained historically because of the requirement for the physical presence of someone who is skilled at microscopic examination. There are scenarios where there cannot be enough of these people available to render an accurate microscopic assessment. This absence is particularly true outside the U.S. where there is an ever-expanding shortage of pathologists and where patients are unable to receive a definitive pathologic diagnosis.

I described a specific situation at my institution where there were not enough skilled people at our satellite locations evaluating fine needle aspirations and biopsies for adequacy. This unavailability might have resulted in patients sometimes having to undergo multiple subsequent biopsy procedures or invasive procedures.

Dr. Lopez: Oh, how interesting, that’s certainly not the experience we want our patients to have. How has you worked to change this?

Dr. Sirintrapun: In a nutshell, because telemedicine or telepathology can cut out the need for physical transport and manual handling of glass slides and patient information, I created a telepathology framework to overcome the need for physical presence of someone skilled at microscopic evaluation. We’ve been able to use remotely operated robotic microscopes and microscopes streaming high-definition video to evaluate tissues at other locations and communicate our findings.

Dr. Lopez: That’s great! Thank you, Dr. Sirintrapun.

Dr. Greer, what are some other ways that telemedicine can help patients with cancer?

Dr. Greer: Yes, the change from using paper medical records to electronic health records is a big development. The goal is to be able to virtually link a patient’s medical record with mHealth tools in their home. For example, this could include a camera equipped with secure software to assess skin changes and rashes associated with chemotherapy or radiation, or computer-based interactive tools to assess symptoms related to cancer care in real time.

Also, many patients in rural areas are not able to enroll in clinical trials. Telemedicine may be used to facilitate access to cancer clinical trials by virtual eligibility assessment, consent, and symptom assessment and management. It evens out the access to the benefits of clinical trials between urban and rural patients.

Dr. Lopez: And what about big data? That’s a term that we hear a lot about in the news.

Dr. Greer: Yes, big data is one of those hot terms. Essentially, it means that we can use electronic health records, without any patient-identifying information, to amass a lot of medical information on a lot of people. Then, we can use computer algorithms to find patterns across the population to more effectively diagnose and treat cancer.

Dr. Lopez: Thank you, Dr. Greer. And thank you Dr. Edison and Dr. Sirintrapun. Technology is a tool that may free the doctors to focus on patient care and allow patients to more easily communicate with their medical team. We may see improved coordination of cancer care, lower costs, time savings, early disease detection, and increased access to care, education, and personalized care through telemedicine and teleoncology.

We appreciate your time and sharing your wisdom with us, and we appreciate the time of all the listeners, and look forward to hearing of your experiences as you explore these opportunities. Thank you. I hope you’ve enjoyed our podcast. To learn more, please view our article online at ASCO.org/edbook. Thank you.

ASCO: Thank you Dr. Lopez, Dr. Sirintrapun, Dr. Greer, and Dr. Edison. Please visit ASCO.org/edbook to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

Health & Disability Insurance

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This video was originally published by LiveStrong on February 10, 2010, here.

Those affected by cancer need to understand health and disability insurance. This is an overview of things you need to know under current laws. To learn more, consult with those knowledgeable about insurance matters. If you are working, talk with your employer’s benefits coordinator and the insurer.There are often changes in how people in the United States receive health care coverage. Some of these changes may benefit people affected by cancer. To learn more and stay up to date, visit HealthCare.gov. Also, the LIVESTRONG Cancer Navigation Services and Triage Cancer’s Health Insurance Resource Center offer guidance about insurance and other cancer-related issues.

If You Have Health Insurance

1. Read your policy to learn what is covered and not covered. Talk with the insurer to get answers to your questions. You also need to understand what the plan requires. For example, there may be certain limits on when you are allowed to submit insurance claims or to appeal claim denials.

If you do not have a copy of your insurance policy, ask the insurer for another. You do not have to tell the insurer about your cancer diagnosis at the time you request the copy.

2. Continue to pay the full amount of your insurance premiums on time. This will keep your health coverage active. An insurer cannot deny benefits for covered medical services when your policy is active. If you do not pay the full premium on time, your policy will be closed (or lapse). If your policy is closed, health coverage will stop.

After a cancer diagnosis, it can be very hard to find new coverage if an existing insurance policy lapses. If a new policy can be purchased, it will likely cost much more and have longer waiting periods. It may also exclude certain benefits due to medical history.

What to Think About in a Health Insurance Plan

3. Follow all of the insurance plan’s rules. For example, many insurance plans require that you contact them to get specific medical services pre-approved. This means that your health care provider’s office should contact the insurer before sending you for tests or other treatment.

Make a list of all your current health care needs. Include services and treatments that you may need in the future. Compare your health plan benefits to expected medical needs. This will help you decide whether you already have the coverage that you need.

If You Don’t Have Health Insurance

Begin to look for ways to find coverage if you have concerns about having no health insurance. Check out options such as:

  • Group insurance through a union or as a member of another group.
  • An individual health insurance policy that you buy for yourself.
  • Federal or state benefit programs that are based on your income and disability.
  • Services through county, community and hospital programs.
  • Insurance coverage under the health plan of a loved one.
  • A new job that offers group health coverage.
  • The insurance options finder tool at finderhealthcare.gov.

Types of Insurance Coverage

Group health plans are offered through groups with employees or members such as:

  • Employers.
  • Credit unions.
  • Labor unions.
  • Trade groups.
  • Organization or association groups

These plans cover a large group of people. The insurer cannot refuse to insure any members of the group health plan. However, health conditions that existed before enrolling in the plan (called pre-existing conditions) may not be covered right away. This is defined by the policy.

Individual health plans are purchased by one person. The cost is usually much higher than group plan coverage. This type of plan may not cover certain pre-existing health conditions. When you apply, the insurer will review your medical history and decide what a plan will cost. They may decide not to sell the health coverage to you.

How to Find Out About High-Risk Pool Coverage

High-risk pools—Many states have organized private, self-funded insurance coverage offered through high-risk pools. These are plans for people who have not been able to get other insurance. Proof of this inability to get other insurance may be required when you apply such as copies of denial letters from insurers. The National Association of Health Underwriters (NAHU) offers a consumer guide to high-risk health insurance pools.

Laws that Affect Health Insurance Coverage

Be sure to keep your health insurance if you have it. If you lose your insurance, it may take time or cost more to purchase another health policy. Three important laws affect health insurance coverage.

Affordable Care Act of 2010 puts health insurance reform into effect over a period of years. The following changes in insurance coverage may help people affected by cancer:

  • Private insurance companies cannot deny coverage to children (under age 19) with pre-existing conditions such as cancer.
  • Health plans cannot drop a person from coverage when they become sick.
  • No lifetime dollar limits on coverage through individual and group health insurance plans.
  • Young adults can be covered under a parent’s insurance policy until they reach age 26.
  • Seniors with Medicare benefits to receive discounts on brand drugs by 2013. The coverage gap will be closed completely by 2020.
  • High-risk insurance pools set up in every state to provide coverage for the uninsured.
  • Medicare and new private health plans will cover preventive services (like breast, cervical and colorectal cancer screening) with no co-pays and deductibles.

For more information and updates about the Affordable Care Act, visit healthcare.gov.

Consolidated Omnibus Budget Reconciliation Act of 1986 (COBRA) is a federal law that provides the right to continue health benefits for a certain amount of time after leaving a job. The former employee must sign up within a certain time frame and pay the full premium amounts. It also applies to loved ones who were covered by the employee’s health insurance plan.

If you know that you will be leaving your job:

  • Talk with your employer’s benefits department. Find out how and when leaving your job will affect your health benefits.
  • Learn about the COBRA coverage that will be offered when you leave your employer. Ask how much it will cost.
  • Find out about the dates for signing up and for making payments. Pay the full amount on time every month.
  • Ask when COBRA payments will start and how long the health benefits will last.
  • If needed, ask if you can get insurance benefits beyond the initial COBRA coverage period. Some plans allow this in certain cases.
  • Find out if your state offers insurance programs or other ways to keep your health insurance after COBRA.

Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law. It protects those covered by group health insurance plans. It limits the length of time a group plan insurer can refuse to cover pre-existing health conditions. It also protects personal privacy.

Under HIPAA, you may be able to keep health coverage if you go from one group plan to another. For example, if you change employers, the new group plan must cover a pre-existing medical condition without an exclusion period if:

  • You have had health insurance with no gaps in coverage for longer than 63 days and
  • You have had health insurance for at least the previous 12 months

HIPAA does not protect the coverage provided by individual health plans. If you try to change to a different individual plan, the new insurer can legally turn you down.

Some states have health insurance protection laws that are similar to federal laws. Check to see if your state has laws that can help you get or keep health coverage. Read more about HIPAA protections at hipaa.com.

Disability Income Insurance

Group and individual disability income plans provide benefits if you are not able to work. There are two types of disability policies:

  • Short-term policies pay a weekly income benefit for a short period, such as up to two years.
  • Long-term policies pay income benefits for the time specified by the policy. This could be as long as the rest of a person’s life. It might be up to the age when a person can retire (65 or 67).

Some employers offer short-term disability insurance. The income benefits start soon after you cannot work. They may continue until long-term benefits start. Even if you become unable to work, pay the full insurance premium on time. Keep paying until you get a written notice to stop. If you do not pay, the insurer will cancel your policy.

Long-term benefits continue as long as you are disabled. The insurer will review your case regularly. Benefits will stop if you go back to work. They will also end if a health care provider informs the insurer that you are no longer disabled.

For more information, check out Triage Cancer’s Disability Insurance Resource Center.

Dealing With Insurance and Benefit Claim Denials

Always look into insurance and benefit claim denials. If you are denied benefits, you may need to appeal the insurer’s decision. An appeal must be filed within the time allowed by the insurer.

You or someone else may have to advocate or fight for your rights. Ask the insurer to answer your questions about the denial decision. Use all of your appeal options. If you believe that a claim denial is unfair, contact an advocacy organization for help such as:

As you go through treatment, you will need to share information with insurers and health care providers. If you are not feeling well enough to do this, ask someone you trust to help. He or she can keep track of insurance applications, claims, payments, denials and appeals. Your health care provider can also refer you to a social worker for help.

If you have questions about an insurance denial, an appeal or your rights, you can contact the Employee Benefits Security Administration. They are part of the U.S. Department of Labor and will offer free, confidential assistance.

Federal & State Benefit Plans

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This video was originally published by Livestrong.org here.

 

Federal and state benefit programs offer help to meet health care and income needs. These programs can help those who can’t work due to cancer, treatment or aftereffects.

American Institute for Cancer Research

Research shows the choices we make every day affect our chances of getting cancer. Scientists have found that what you eat, how you move and how much you weigh can lower your risk for many cancers.

Types of federal and state benefit programs:

  • Social Security Disability Income (SSDI): This program pays income benefits to people who are disabled. Benefits may also be provided to certain family members. You must have worked and paid Social Security taxes for a certain number of years to qualify.
  • Supplemental Security Income (SSI): This program pays income benefits to disabled adults and children who have limited income and resources. Benefits may also be paid to people over age 65 who are not disabled if they meet the financial need requirements.
  • Medicare is the federal health insurance program that includes coverage options for prescription medication, doctor services and hospital visits. This program helps with the cost of health care, but it does not cover all medical expenses or the cost of most long-term care. Medicare services are for people with certain disabilities and for citizens or lawfully admitted residents of the United States who are 65 years of age or older. A portion of the payroll taxes that are paid by employers and employees finances Medicare. It is also partially funded by monthly premiums that are deducted from Social Security checks. Generally, you or your spouse must have worked for at least ten years in Medicare-covered employment to qualify for benefits.
  • Medicaid is a partially federally-funded health care program administered by the individual states. Each state sets its own income and disability eligibility requirements and service guidelines. Medicaid does not pay income benefits but sends payments directly to the health care providers, such as doctors and hospitals. Many states extend Medicaid coverage to people who qualify for SSI benefits. However, a number of states use their own eligibility rules for Medicaid and some require a separate application. Contact your state department of health for more information about programs that exist in your area.

The Centers for Medicare & Medicaid website helps you find answers about Medicare and Medicaid. There are online tools to help you compare and find the best Medicare prescription drug plan for your situation. The CMS also provides contact information for all state health departments. You can then contact your state or county Department of Health and Human Services office for help.

Finding Out Your Eligibility

Read about the federal and state programs before you apply for benefits. Learn about the medical requirements that make you eligible for benefits. Here’s who to contact and tools to help:

Applying for Benefits

Apply for benefits as soon as cancer is diagnosed. The process takes an average of 65 days. SSDI benefits generally do not start for about five months after the date you are found to be eligible.

Talk with your health care provider if you can no longer work or do your job duties. Your health care team may have ideas about changes that could help you continue to work. For example, you might ask your employer to change your work hours or some of your job duties for a time.

If your provider believes you should not work for a while, ask him or her to note this in your medical file. Also, try to get a letter from the provider stating this medical opinion. You can include a copy of this letter when you apply for benefits. Take the following steps to apply:

1. Prepare your case. Read about each benefit program. Understand what is required before you apply. This will help you include the documents that are needed such as medical reports.

2. Read the Listing of Impairments from the SSA. Read about what qualifies you as disabled. The SSA website provides good information about the medical proof that is required.

3. Talk with your health care team about applying for disability benefits. Ask them to write down treatment side effects and physical limitations in your medical records. Tell them about your symptoms. Give examples of how this is affecting your work and personal life. Ask that this be noted in your medical records. This information will be important to the SSA as your medical records are reviewed when you apply for benefits. If your provider believes you should not work for a while, ask him or her to give you a note or letter stating why you should not work at this time.

4. Consider your provider’s opinions and recommendations about your ability to work. If you and your provider do not agree, you can seek other medical opinions. To qualify for benefits, proof of your disability is required from a health care provider.

5. Keep good records. Keep track of all letters, bills and claims information. Also, keep notes about discussions between you and your health care team, the insurer and others. Write down dates, names of people and what was said. These records may be useful if there are questions or concerns in the future. Always keep copies of information received from or sent to insurers and benefit programs.

Who Can Help You Apply?

Ask for help if applying for disability benefits seems too difficult. For example, a social worker, friend, loved one or a nonprofit legal services group may be able to help you. You can also contact nonprofit cancer organizations for help with insurance and benefit matters. For example, LIVESTRONG Cancer Navigation Services can guide you through the process of applying for benefits.

You can contact the National Cancer Legal Services Network to locate free legal services to address insurance, employment and financial issues. Also contact Legal Health to get advice and representation.

Tips for Reducing Cost of Care

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This video was originally published by Cancer Support Community on September 26, 2018, here.

 

 

 

 

Don’t Drown in Medical Debt

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This video was originally published by The SamFund on August 21, 2015, here.

If you’re a young adult with a cancer history, you probably know that feeling in your stomach that you get each time a medical bill shows up, or the phone rings with a collections agency on the other end. As most of us already know well, medical debt can have wide-ranging consequences that negatively impact your credit and your future.
While you may be struggling today, there are steps you can take to reduce and hopefully eventually eliminate that debt entirely! In this Webinar, Monica Bryant, Esq., COO at Triage Cancer will share strategies to: avoid medical debt before you find yourself in over your head, reduce medical debt once it starts to add up, and shift and prioritize your regular expenses.
Additionally, you’ll learn more about resources available to help negotiate medical bills, how credit counseling agencies can be helpful, and why self-advocacy is such an important part of recovering from debt.

Paying for Clinical Trials

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This video was originally published by Cancer.gov on September 3, 2019, here.

 

Paying for Clinical Trials

Find a Clinical Trial
Learn about the different types of costs related to taking part in a clinical trial, and who is expected to pay for which costs.

As you think about taking part in a clinical trial, you will face the issue of how to cover the costs of care. There are two types of costs associated with a clinical trial: patient care costs and research costs.

Patient care costs are those costs related to treating your cancer, whether you are in a trial or receiving standard therapy. These costs are often covered by health insurance. They include:

  • Doctor visits
  • Hospital stays
  • Standard cancer treatments
  • Treatments to reduce or eliminate symptoms of cancer or side effects from treatment
  • Lab tests
  • X-rays and other imaging tests

Research costs are those related to taking part in the trial. Often these costs are not covered by health insurance, but they may be covered by the trial’s sponsor. Examples include:

  • The study drug
  • Lab tests performed purely for research purposes
  • Additional x-rays and imaging tests performed solely for the trial

When you take part in a trial, you may have extra doctor visits that you would not have with standard treatment. During these visits your doctor carefully watches for side effects and your safety in the study. These extra visits can add costs for transportation and child care.

Cancer Clinical Trials Are For All Patients: Latest Research from the 2019 Quality Care Symposium

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This podcast was originally published by Cancer.net on September 3, 2019, here.

 

In this episode, we’re going to discuss 2 studies on patient experiences with clinical trials that will be presented at ASCO’s 2019 Quality Care Symposium. This annual meeting brings together health care experts to share strategies for cancer care issues and integrate these methods into patient care.

Transcript:

[music]

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Monika Sharda: Hi, I’m Monika Sharda, an editor on the Cancer.Net team and your host for today’s podcast. In this episode, we’re going to discuss 2 studies on patient experiences with clinical trials that will be presented at ASCO’s 2019 Quality Care Symposium. This annual meeting brings together health care experts to share strategies for cancer care issues and integrate these methods into patient care. I have with me 2 oncology experts who will help us understand these studies and why they’re important. Our first guest, Dr. Merry-Jennifer Markham is a hematologist at the University of Florida in Gainesville. Welcome, Dr. Markham.

Dr. Markham: Hi, hi. Thanks for having me.

Monika Sharda: And we also have with us Dr. Neeraj Agarwal, who is a medical oncologist at the University of Utah’s Huntsman Cancer Institute. Thanks for being with us, Dr. Agarwal.

Dr. Agarwal: A pleasure. Thank you.

Monika Sharda: So before we delve into the studies, I want to make sure we explain what clinical trials mean for any listeners who may not be familiar with the term. Can you provide a brief explanation of what a clinical trial is and how they’re used in cancer care?

Dr. Agarwal: Yeah, of course. So if we look at the definition of National Cancer Institute, how the clinical trial is defined that is a type of research study that test how well new medical approaches work in our patients. And these studies test new methods of screening, prevention, diagnosis, or treatment of a disease. These are often called as prospective clinical studies, but I make it simple for my patients. I tell them that to me the definition of a clinical trial is how to get cutting edge technology, which can be a treatment or a device, to my patients 5 years before FDA approval of that drug or a device. How to expedite availability of those cutting-edge technology to my patients is the definition I use for clinical trials.

Monika Sharda: Thanks. That’s a great way to put it. So let’s start by discussing the study that comes out of Seattle, Washington where researchers looked at whether participating in a clinical trial helped people with metastatic non-small cell lung cancer live longer. Can you tell us a little bit about how the study was conducted, Dr. Agarwal?

Dr. Agarwal: Yes, and this study, as you mentioned, was conducted in Seattle Cancer Alliance consisting of University of Washington and Fred Hutchinson Cancer Research Center, both based in Seattle, Washington. What the researchers did, they looked back at the records of patients with non-small cell lung cancer or simply advanced lung cancer who were treated in their institutions between January 2007 and December 2015. And they included 371 patients.  One-third of those patients, almost 30% of patients were enrolled on 1 or more clinical trials. And other patients were not enrolled in the clinical trials. And they compared, basically, those patients. They looked at the survival of patients who were able to get on a clinical trial versus who did not. And very interestingly, patients who were enrolled on a clinical trial, their median survival was twice as much as those who did not get to enroll on a clinical trial. The overall survival in patients who were on clinical triasl who got to get treated on a clinical trial—at least one clinical trial—was 838 days compared to patients who did not go on a clinical trial who only lived for 454 days. This is even more interesting is because the researchers compared the patient’s disease characteristics, demographic characteristics, and they made sure that patients were evenly distributed from those characteristics. It’s not that patients who had more aggressive disease or who had a higher history or longer history of smoking, they got to be under control arm, which is that they did not get on the clinical trial. So patients in both groups were evenly matched for demographic and disease characteristics. So this basically tells me that if you get to enroll on a clinical trial, the overall survival is higher than if you do not.

Monika Sharda: And do we know why that might be? Why patients that were enrolled in clinical trials tended to live longer?

Dr. Agarwal: As I said, clinical trial allows me and my patients to have those technology or those drugs available to the clinic 5 years before FDA approval. And that’s the ballpark. It can be 7 years. It can be 10 years. It can be 3 years. But in general, 5 years is the mark I use with my patients. So if a patient is getting to be treated with a drug 5 years before that drug would be available by prescription, there is an advantage of time, because if we look at the median survival of this patient population, there is no way they could have just waited for that drug to get approved and be available by prescription in the clinic. So I think that’s a huge advantage, that they had access to a drug for their cancers which was not available to those patients who did not get to go on a clinical trial. I think that’s the number one, or the main advantage, why the survival is so much better in the patients who got to go on a clinical trial.

Monika Sharda: Right. And the other study focuses on clinical trial enrollment. So statistics show that less than 10% of people with cancer participate in clinical trials. For this  study, researchers surveyed 120 doctors and clinical trial research staff and also 150 cancer patients to try and find out why participation is so low. So Dr. Markham, can you tell us briefly what the researchers found?

Dr. Markham: Sure. I think 1 of the things that is striking is that the number of patients who enroll on trials is so low, the percentage. And we know the barriers to clinical trial enrollments do exist. What this study showed actually was that the perceptions of what these barriers are, really differed between the physicians and research staff and the patients. So clearly we didn’t have a great understanding of the barriers on each side.

I’ll give you just a couple of examples. In this study, patients more often than physicians or research staff believed that trials are only available and only for people whose cancer is considered hopeless. We know that’s not reality, but that’s a perception that panned out in the study. Also more patients, more so than physicians or staff, believe that clinical trials don’t help an individual patient. And we know that not to be true. And I think that former study is a really good example of that where in the prior study participating in a clinical trial actually did improve survival. And then a third example is physicians and research staff in the study, more so than patients, were more likely to believe that patients decline a clinical trial due to either language or cultural barriers or due to a lack of understanding about clinical trials.

Monika Sharda: Where do you think these perceptions arise from that people have about clinical trials, just going back to the couple of examples that you gave? For example, people thinking that clinical trials are only used when their disease is hopeless or that they don’t actually help the patients themselves. Where do you think those perceptions stem from?

Dr. Markham: It’s hard to know, but I think communication or lack of communication about trials, or lack of enough communication about clinical trials is really a large part of the problem. I think that clearly this is evidence that we oncologists and cancer researchers maybe haven’t done a great job or as good a job as we should be doing when it comes to educating our patients. I think this study demonstrates that we do have a lot of room to improve on the patient education piece.

Monika Sharda: Do you have any thoughts on some specific ways that people with cancer and their family can work together with doctors to communicate better about clinical trials?

Dr. Markham: I think the more education on the cancer or various topics that patients want to bring up in the exam room, the more sort of preparation work a patient and a caregiver can do in advance of the visit the better. Coming to an appointment with a list of questions about trials for example can really help to guide a conversation. I think that it’s also a good idea to bring somebody with you to an appointment and this holds true for other reasons, including listening in and having some extra set of ears there to hear important parts of a discussion about a cancer diagnosis or prognosis or treatment. But really helping to sort of prompt questions about clinical trials may be useful.

I think for doctors, a good way to open up this conversation is just with open-ended questions. Some of the things I like to ask my patients are, “What do you know about clinical trials?” or, “What would you like to know about clinical trials?” And this is really a good way for me as a physician to gauge the level of understanding of a trial at the outset. And I can gauge whether there’s any perceptions or misperceptions that I can help to clarify. And it’s a great launching pad for a discussion about clinical trials.

Monika Sharda: Dr. Agarwal, did you have anything to add about this study?

Dr. Agarwal: I think I agree with everything Dr. Markham just said. In my practice, I spend a significant amount of time when I see a patient for the first time who has come to establish care in my clinic, on just orienting them on clinical trials regardless of whether they are currently eligible for the trial or we have a trial for them or not. I just talk to them about the clinical trials. And that is a theme in my practice. Even a nurse practitioner and nurses, the more our patients hear about clinical trials, I think more amenable they will be or they are, in our experience, to accept enrollment on a clinical trial down the line. But as Dr. Markham said, it’s not only 1 doctor or 1 nurse or 1 nurse practitioner. I think it has to be a more holistic approach educating at different levels. All the websites as we discussed as we know of from Cancer.Net, NCI, ClinicalTrials.gov. All those websites have great information on clinical trial availability of a clinical trial for a given disease condition or given stage of a disease. By doing all of those our patients can be made aware of all those websites other than the orientation in the clinic. So I think this has to be a global approach and which ultimately will lead to increased awareness and increased participation of our patients on clinical trials.

Monika Sharda: Thanks. And I appreciate you sharing some resources with our listeners of where they can learn more about clinical trials so they can be prepared to have these conversations with their health care team. And just a quick note for our listeners, you can learn more about clinical trials on Cancer.Net by visiting cancer.net/clinicaltrials. And there’s also a couple of other resources that Dr. Agarwal mentioned. Dr. Markham, did you want to add any other resources?

Dr. Markham: Sure. So Cancer.Net is definitely a great resource. And it’s written in a way that is easily understandable. The other 2 that I would mention are the American Cancer Society’s website and the National Comprehensive Cancer Network or NCCN. And both of those have very good information about clinical trials in general. ClinicalTrials.gov, as Dr. Agarwal mentioned, also does and can be a very useful tool at finding a specific clinical trial for a specific condition.

Monika Sharda: Great. Well, thank you both for taking the time to distill these studies and the takeaways for people with cancer and their loved ones. Is there anything else that you would like to note about either of these studies or about clinical trials in general that we haven’t already touched on?

Dr. Markham: Yeah, I was going to say I think I would just add that I commend the researchers who did these studies and are getting their work published. I think it’s important that we improve access to clinical trials as much as possible. And these two studies help to work in that direction.

Dr. Agarwal: I agree, 100%.

Monika Sharda: Great. Well, thank you both again for your time.

ASCO: Thank you Dr. Agarwal and Dr. Markham.

You can find more research from recent scientific meetings at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

This Cancer.Net podcast is part of the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content offering insight into the world of cancer care. You can find all 9 shows, including this one, at podcast.asco.org.

Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

About the Chemo

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This podcast was originally published by BBC You, Me & the Big C on March 15, 2018 here.

The #youmebigc team, Rachael, Deborah and Lauren give you their personal guide to all things chemo. They are joined by chemotherapy nurse Kate Lewis from The Royal Marsden who shares her advice and expertise.

Chemo Class with Madelieine Kuiper

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This podcast was originally published by Kappa Kappa Cancer on February 13, 2019, here.

Why can’t I have sushi or manicures while on chemo? Erin’s lifeline for meds and frantic midnight emails during her treatment, her Nurse Practitioner Maddie Kuiper, visits the studio to walk us through a typical chemo session, how chemo meds vary and when you should/shouldn’t freak out and call your nurse.

Immunotherapy in the Elderly

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This blog was originally published by Cancer Today by Emma Yasinki here.

Immune checkpoint inhibitors can be effective treatments for elderly people with some types of advanced cancer, but more information is needed on their risks and benefits in this group.

by Emma Yasinski

​Photo by graffoto8​ / iStock / Getty Images Plus

CHECKPOINT INHIBITORS, a type of immunotherapy drug, help spur the immune system to kill cancer cells. These drugs can be effective treatments for some patients who otherwise would have few options.

Beginning in 2011, with the approval by the U.S. Food and Drug Administration of the first checkpoint inhibitor, seven of these immunotherapy drugs have come onto the market for treatment of various cancer types.

Enthusiasm for these drugs is widespread, including among elderly patients with advanced cancer. Now, some frail elderly patients who might previously have opted out of chemotherapy are choosing immunotherapy in hopes of achieving a long-term response.

But data on immunotherapy side effects and outcomes are more limited in elderly people than in younger patients. Some doctors worry that all the excitement surrounding checkpoint inhibitors is preventing older patients from getting palliative and hospice care that could be more likely to improve their lives.

Rawad Elias, an oncologist at Hartford Hospital in Connecticut, studies immunotherapy in older patients and presented on the topic at the American Society of Clinical Oncology Annual Meeting in Chicago in June 2019. Cancer Today spoke with Elias about the benefits and risks of checkpoint inhibitors and how their availability may affect treatment decisions for older patients.

Q: Are there common misconceptions among patients and families about checkpoint inhibitors?
A: We’re very excited about [immunotherapy] because it’s an option now other than chemotherapy, [but] it doesn’t work in all cancers. Even in the cancer[s] that it works for, it doesn’t work in all patients. And most patients, in fact, do not respond to checkpoint inhibitors.

We often see patients who … ask us, “OK. How about immunotherapy?” And we’ll have to explain that, unfortunately, in your type of cancer, it doesn’t even work.

Q: What do we know about the efficacy of checkpoint inhibitors in older patients?
A: Unfortunately, older adults are underrepresented in clinical trials. Older adults constitute about 60% of cancer patients, and [in] the clinical trials of checkpoint inhibitors, they [made up] about 40% [of participants]. Also, patients who are enrolled on clinical trials are usually the … fit people with [few] medical complications. So we don’t really understand the clinical profile of these drugs in the real-world population.

We did some work in the past looking … if the efficacy of the checkpoint inhibitors is similar across age groups. We published that in the Journal for ImmunoTherapy of Cancer based on [an] age cutoff of 65. The efficacy of checkpoint inhibitors was considerable in younger and older adults. What we don’t know about, though, is what’s the impact of frailty on these medications? And does that make patients more prone to toxicity? Does it make the efficacy of the drug less?

Q: What are the special considerations older patients need to take into account when considering checkpoint inhibitor therapy?
A: What we don’t know about … is the impact of low-grade toxicity or any toxicity on older adults. We tend to call things like fatigue or a little bit of nausea “low-grade” toxicity, but we don’t know the impact of this low-grade toxicity on an 80-year-old person who already has trouble getting out of the house.

When it comes to older patients with an advanced cancer, this is a really critical thing to discuss: What’s your quality of life during this period of time, and what matters most to you as a person? The goal is not to go and treat the cancer. The goal is to treat you as a person. And it’s only you as a patient who gets to determine: What does that mean?

For example, [one of my patients], even though therapy could have been an option for her, she’s a frail older adult. We talked about [the fact that] the impact of treating her with immunotherapy would be potentially more fatigue and coming to the doctor’s office [more frequently]—coming in once every two weeks or once every four weeks … getting bloodwork, waiting in the waiting room to see the doctor and then getting the infusion, then going back home, then coming back again. So the question is: Does that make sense to you? My patient … decided that doesn’t make sense to her based on what we think … [immunotherapy] is going to achieve.

Q: Why are some people concerned that the increasing popularity of checkpoint inhibitors could hinder access to palliative and end-of-life care?
A: Unfortunately, when we’re treating cancer patients, we’re treating a very hard disease and even small things get us excited. In the hype or the excitement about checkpoint inhibitors, many may skip that conversation [about risks and alternatives like palliative care] and go straight to, “Let’s start you on checkpoint inhibitors and see what happens.” And what’s happening in most patients is that they do not respond, and we forget about palliative care which we know, for sure, makes people have a better quality of life, keeps them outside the hospital, keeps them at home. This is not to say older adults should not be treated, but to say that there are concerns about these drugs. They do not work for everyone.​ ​​

Emma Yasinski​ is a Florida-based freelance science and medical journalist.​

Focusing on Proton Therapy

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This blog was originally published by Cancer Today by Sue Rochman here.

Proton therapy, an alternative to standard radiation therapy, is safe and effective. But evidence is lacking that it’s always a better option than standard radiation, and some insurers balk at the higher price tag.

by Sue Rochman

Photo by ​​​​gorodenkoff​ / iStock / Getty Images Plus

 

IN AUGUST 2017, Ha​uli Sioux Warrior Gray noticed a lump in her left breast. Two months later, after having seen three different health care providers, the then 33-year-old mother of two from Yukon, Oklahoma, learned she had stage IIB breast cancer. In November, she started chemotherapy to shrink the 7-centimeter tumo​r in her left breast and kill the cancer cells that had spread to her lymph nodes. In March 2018, she had a mastectomy. When it was time to start radiation, Gray says, her radiation oncologist at the Integris Cancer Institute in Oklahoma City explained that proton therapy would be a better option than standard radiation therapy because “it would save my heart and lungs.”​

Gray’s doctor sent a treatment proposal for proton therapy to her health insurer. The request was denied. “I didn’t know insurance companies did that,” says Gray. Aided by a media consultant brought in by her doctor, Gray used social media and local news outlets to tell her story. Time was ticking—the first of 34 proton therapy radiation treatments that would target her lymph nodes and any breast tissue remaining in her chest wall was scheduled for May 10, just three weeks away. When her insurer wouldn’t budge, the proton therapy center, ProCure, agreed to front the cost. The same day, says Gray, the Indian Health Service, which also provided her with health benefits, called to say they would cover the cost of the treatment. “I was surprised, shocked and happy,” says Gray. “I had been praying and asking God if this is what needed to be done.”

For about a century, radiation therapy has been a mainstay of cancer treatment. Standard radiation systems use photons, or X-rays, to kill cancer cells. Proton therapy uses particles that can be targeted at the tumor more precisely. Studies have shown that proton therapy is safe and effective. Less clear is which patients with which types of cancer should receive it instead of standard radiation. Clinical trials that compare proton and photon therapies are now underway, but enrolling patients hasn’t been easy. And in the years that it takes fo​r the answers to come in, thousands more cancer patients will find themselves in a position similar to Gray’s.

Photons and Protons

Radiation kills a cell by damaging its DNA. The photon beam used in standard radiation therapy travels through normal cells in the body, gets into the cancer cells, and then travels again through normal cells as it comes out the other side of the body. Protons are particles with a different set of physical characteristics. They accelerate and penetrate the skin quickly, explains Steven Lin, a radiation oncologist at the University of Texas MD Anderson Cancer Center in Houston. Then the particles stop at the tumor, where they deposit all their energy at once.

The U.S. Food and Drug Administration (FDA) approved proton radiation as a cancer treatment in 1988. Before the FDA can approve a new cancer drug, clinical trials must show that the treatment is safe and effective for a specific type of cancer. New devices and technologies like proton therapy are held to a different benchmark. They only have to be proved safe and effective overall, not for a specific use. This means “there is no clear indication where proton [therapy] should be the standard treatment,” says Lin. Instead, “every cancer patient who needs radiation is potentially eligible for proton treatment, but not all patients will benefit.”

When there are no specific indications for a treatment’s use, insurance coverage can vary widely. Medicare typically covers the cost of proton therapy, regardless of the type of cancer. But many private insurers do not want to pay for proton therapy when it has not been shown to be more effective than standard radiation therapy and can cost four to 10 times more. A recent study found that two-thirds of patients with private health insurance initially had their requests for proton therapy denied. (On appeal, about 68% of patients initially denied coverage had their treatment approved.)

​Determining the BenefitFor children with cancer, proton therapy is now a routine treatment. “For many pediatric patients, proton therapy offers clear benefits,” says Shannon MacDonald, a radiation oncologist at Massachusetts General Hospital in Boston. When treating children, she explains, “you are treating brain tumors and tumors close to areas that are responsible for future growth.” Before proton therapy was available, some of these children would not have been able to have radiation at all. With proton therapy, she says, they can be treated, and the tissue spared from radiation will continue to grow and develop normally. Proton therapy has also made radiation a possibility for some adults with rare or difficult-to-treat cancers, such as tumors in the central nervous system, brain, head and neck, eye, skull and spine.

In other instances, proton therapy has allowed many patients to avoid some or all of the potential side effects associated with standard radiation therapy, which can include skin problems, pain and swelling, and heart and lung problems. That was the case for Arianne Missimer of Coatesville, Pennsylvania, who was diagnosed in 2015 with a stage III liposarcoma—​a rare cancer that can start in muscle tissue—in her right thigh. The 34-year-old physical therapist, registered dietitian and athlete needed radiation therapy to treat her cancer and was concerned about her potential risk for pain, swelling, weakness and long-term bone damage. Her radiation oncologist explained the difference between photon and proton therapies and then suggested proton therapy at Penn Medicine’s Roberts Proton Therapy Center in Philadelphia. Her insurer was willing to cover it.

A Growing Business

Proton therapy centers are now ​located across the U.S.

​Waiting for Answers

It’s unclear whether proton therapy improves outcomes and reduces side effects in other cancer types, including breast and prostate cancer. The National Cancer Institute (NCI) and the Patient-Centered Outcomes Research Institute (PCORI) have funded seven phase III randomized trials comparing proton therapy and photon therapy in patients with breast, esophageal, liver, lung and prostate cancer and two types of brain tumors, glioblastoma and low-grade glioma. Some of the trials are comparing overall survival; others are looking at reductions in symptoms and side effects.

New Research Sheds Light on Side Effects

When combined with chemotherapy, proton therapy is associated with fewer severe s​ide effects than standard radiation therapy, according to a​ study.

The results of these trials have the potential to inform future treatment guidelines, but finding patients for the studies has been laborious. In 2018, almost two years after it opened, the breast cancer trial had enrolled only 317 of 1,716 patients needed; after five years, the prostate cancer trial, which needs 400 patients, had enrolled only 254. Radiation oncologists point to multiple factors contributing to the slow patient accrual. In some cases, says Lin, doctors may believe proton therapy is better, and they don’t want their patients to participate in a clinical trial where there is a chance they won’t receive the newer approach. In other instances, patients don’t want to take the chance they will be assigned to the treatment arm that doesn’t receive proton therapy.

There is also an insurance barrier. In the major proton therapy trials, insurers are asked to pay for patients’ radiation treatment, whether it’s proton or photon therapy. Justin Bekelman, a radiation oncologist at the Penn Medicine Abramson Cancer Center, says it’s all too common for insurers to say they won’t pay for an unproven treatment when a patient is selected for the proton therapy arm. Bekelman was the lead investigator for the breast cancer trial and a co-lead investigator for the prostate cancer trial.

“Naturally, insurance companies are going to question the value,” says Bekelman. “That’s precisely why we need to run these trials. We want to determine if there are benefits and if there are harms to proton therapy, and in which cancer patients which treatment will be most successful for cancer control and reducing side effects.” But researchers can’t do that if insurers won’t cover that care.

In 2012, the University of Texas MD Anderson Cancer Center launched the NCI-funded clinical trial comparing protons and photons in esophageal cancer, which aimed to enroll 180 patients. Enrollment closed this year with 104. (Another 21 patients enrolled but couldn’t be evaluated because their insurer wouldn’t pay for the proton therapy.) Lin, who is overseeing the study, says some patients declined to enroll when they learned their health insurance covered proton therapy. “We explain to [patients] that the proton therapy is experimental, which is why we are trying to do the study,” he says. “But they say they’ve heard good things about it. Others say, ‘I have money and I don’t want standard treatment. I want the best.’”

It’s easy to understand why a patient who has pored over a proton therapy center’s website might feel that way. In a study published online March 15, 2018, in Radiation Oncology​, researchers analyzed 46 websites of proton therapy centers—half of which w​ere in the U.S. The analysis found that many centers used language that could lead patients to think that choosing proton therapy would give them a better outcome, says the study’s senior author Alexander Louie, a radiation oncologist and epidemiologist at Sunnybrook Health Sciences Centre in Toronto. “Many of the websites made blanket or generic statements that may not be completely supported by evidence but have some credence potentially or theoretically, blurring the line between evidence and advertising,” he says.

“It’s not as easy as saying if proton therapy is good or bad,” adds radiation oncologist Jeffrey Buchsbaum of the NCI’s Radiation Research Program. “Proton therapy is like a vehicle for getting the patient to a better place. And it has to be used properly.” There are certain situations, he notes, in which patients wouldn’t be alive without proton therapy. “But that doesn’t mean it’s necessary for all cancers.”

Proton Therapy Tips

Follow​ these suggestions​ as you consider radiation therapy options.

​Moving Forward

The American Society for Radiation Oncology has developed model policies for insurers that delineate where there is sufficient evidence to support coverage of proton therapy. Insurers also use National Comprehensive Cancer Network treatment guidelines to support or deny a patient’s treatment with proton therapy. To move research forward, investigators are trying to work with hospitals to find ways to make insurers more amenable to covering the cost of treating patients in randomized clinical trials comparing photon therapy and proton therapy. In some cases, this may include reducing the cost of proton therapy to make it more comparable to that of standard radiation therapy. “The issues happening here are partially the result of the complexity of the health care delivery system,” says Buchsbaum.

But for patients, treatment choices must be made now. Missimer believes that proton therapy helped treat her cancer without sacrificing her athleticism. She is an active member of Penn Medicine’s proton center alumni group, which provides support to patients who are currently receiving or are considering proton therapy. She also appears in an advertisement for Penn Medicine’s proton therapy center, and an article about her experience is included on the cancer center’s website.

Missimer’s treatment began with chemotherapy, which she admits slowed her down. But during her proton therapy, which started in July 2015, she joined a ninja gym. And as she recovered from the surgery and additional chemotherapy that followed the radiation, she kept going. In May 2016, Missimer competed in the Philadelphia regional American Ninja Warrior competition. “I lost my brother to cancer,” she says. “He had radiation and had significant complications. The only thing I get is a little stiffness. But as long as I keep moving, my leg is good.”

Gray completed her proton beam treatment in June 2018, about a year after she’d first felt the lump in her breast. Skin damage is a common side effect of both types of radiation therapy. Gray says her doctor told her that her skin did well during the proton therapy. “But if that was well,” she says, “I can’t imagine what worse would be like. My chest looked like burnt hot-dog skin. And I still have a dark scar from the burn that might not ever go away.” After being out of work for a full year, Gray returned to her job as an educational specialist for Native American youth in October 2018, and she slowly started back at the gym. She wears a compression sleeve and a glove to manage lymphedema that developed in her arm—caused by either the surgery or radiation—and deals with nerve pain in her arm and chest. None of it has been easy, but, she says, “my faith has gotten me through.”​ ​

Sue Rochman is a contributing editor for Cancer Today.​