General Access and Affordability Archives

The impact of cancer isn’t just physical, it’s also financial. Navigating coverage and out-of-pocket expenses is a minefield for many patients and care partners.

Let us help you make sense of costs, coverage and where to turn to for help.

More resources for General Access and Affordability from Patient Empowerment Network.

The High Cost of Five Percent: The Importance of Capping Annual Out-of-Pocket Prescription Drug Costs for Medicare Part D Beneficiaries

This blog was originally published by Cancer Support Community by Kim Czubaruk here.

Tuesday, June 25, 2019

Background on Medicare Part D

Approximately 43 million Americans are enrolled in Medicare Part D – a voluntary outpatient benefit provided through private health insurance plans approved by the federal government. These plans assist seniors in affording their prescription medications. However, for people with complex and serious health conditions who depend on high-cost drugs, affording medications under Medicare Part D is becoming more and more difficult. Below is a break-down of the different payment phases in Medicare Part D and an explanation of why imposing a cap (limit) on the amount beneficiaries pay out-of-pocket each year for prescription drugs is more important than ever.

The Different Payment Phases of Medicare Part D

While there are some differences between Part D plans, all Medicare Part D plans have the following:

  • A Monthly Premium – varies in cost by the plan selected (averaging $33.19/month in 2019) and must be timely paid each month to maintain coverage.
  • An Annual Deductible – varies in cost by the plan selected (but cannot exceed $415/year in 2019) and must be paid in full by the beneficiary before the Part D plan covers any costs of prescription drugs.
  • The Initial Coverage Phase – begins after the beneficiary has paid his or her annual deductible and triggers the Part D plan’s obligation to cover its share of the cost of the beneficiary’s prescription drugs.
  • Coverage Gap Phase (also known as the Doughnut Hole) – begins after the beneficiary and the Part D plan have paid a combined pre-determined amount for prescription drugs ($3820 in 2019) and triggers a phase where the beneficiary is obligated to pay the entire cost of his or her prescription drugs.
  • The Catastrophic Phase – begins after the beneficiary has paid a pre-determined amount in out-of-pocket costs ($5100 in 2019) for prescription drugs and triggers reduced beneficiary cost-sharing obligations for the remainder of the coverage period (in 2019, either 5% of the cost for each prescription medication, or $3.40 for each generic drug and $8.50 in for each brand-name drug, whichever is greater).

Catastrophic Phase of Medicare Part D

Thankfully, most Medicare Part D beneficiaries in 2019 will not have out-of-pocket prescription drug costs that exceed $5100. However, the high price of prescription drugs used to treat cancer and other serious medical conditions is causing more and more Medicare Part D beneficiaries to reach $5100 in out-of-pocket drug costs, sometimes early in the calendar year. When this happens, a beneficiary enters the Catastrophic Phase of Medicare Part D. What does this mean and why is it important?

  1. Once in the Catastrophic Phase, a beneficiary pays 5% of the cost for each prescription medication, or $3.40 for each generic drug and $8.50 for each brand name drug, whichever is greater;
  2. This payment obligation continues for the remainder of the calendar year;
  3. There is currently no cap or limit on the amount a beneficiary pays out-of-pocket annually in the Catastrophic Phase.

The 5% beneficiary cost-sharing in the Catastrophic Phase is the lowest cost-sharing percentage in Medicare Part D and is intended to minimize the cost burden on beneficiaries who have already incurred high out-of-pocket drug costs in any given calendar year. However, unlike commercial insurance plans, Medicare Part D does not cap or limit a beneficiary’s out-of-pocket prescription drug costs in a calendar year. Despite the good intentions behind the low 5% cost-sharing, the combined effect of high-priced prescription drugs and the absence of an out-of-pocket cap is making the Catastrophic Phase the costliest of all Medicare Part D Phases for an increasing number of beneficiaries.

Out-of-Pocket Cap in Medicare Part D

Creating an out-of-pocket cap for prescription drug costs in Medicare Part D would protect beneficiaries from unaffordable prescription drug prices and enable cancer patients and others confronting serious health conditions to focus on their health and take steps to avoid financial toxicity. There is draft legislation currently pending in the United States House of Representatives to cap out-of-pocket costs for Medicare Part D beneficiaries. The Cancer Support Community is encouraged by this development and will continue to monitor the progress of the draft legislation and voice the interests and concerns of cancer patients throughout the process.

To learn more about issues impacting cancer patients and engage in advocacy efforts, sign up to be a member of our Grassroots Advocacy Network.

A Consumer’s Guide to Drug Discounts

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)

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.

RetailMeNot 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 WellRxEasy 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, diabetesasthmamental 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 DirectNurxPrjkt 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

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

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

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

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.

Telemedicine in Cancer Care

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

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 offers 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.

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

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.

  • 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

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

 

 

 

 

Don’t Drown in Medical Debt

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

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.

Patient Assistance Programs (PAPs)

Patient Assistance Programs: A Guide for Patients

Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to cancer.gov, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.

When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.

It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.

While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.

Find a PAP

The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.

Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.

John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.

There are also websites specifically designed to help patients find assistance. Non-profit website needymeds.org was formed in 1997 with the intent of helping patients navigate PAPs. Now a partner with Patient Empowerment Network (PEN), the vast NeedyMeds database of PAPs can be searched using the link below. All you have to do is enter the drug name to discover whether or not a PAP is available.

 

 

While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.

Miller’s advice is good, but most people don’t seem to be following it, according to cancer.gov, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.

AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”

PAP Enrollment

Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.

The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.

 

Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.

PAP Qualification

Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:

  • Have very limited or no drug coverage from public or private sources
  • Must demonstrate a financial need based on a set income and assets
  • Provide proof of US residence or citizenship.

“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”

In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.

“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”

PAP Basics

Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.

AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.

Are PAPs Worth It?

For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.

Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”

Medical Bills, EOBs, and You

Medical bills are confusing, and often frightening. Even if it’s for something simple, the numbers add up fast, and to sometimes alarming levels. Add the Explanation of Benefits (EOB) documents you get from your insurer for the same clinical visit or hospital stay, and you can find yourself wondering how much you owe whom, and for what, exactly?

“Not A Bill”

This will be printed on all EOBs, and is the only sure way to tell which is an actual medical bill, and which is an EOB. However, an EOB can be confusing – other than that clear “Not A Bill” printed somewhere on the form.

This is one of the EOBs I got during my own cancer treatment. It’s for my lumpectomy, but the only way I’d know that is the dates on the form. The singular lack of information on what the EOB is for is one of the distinguishing characteristics of these forms, so knowing what the services were, and what your plan’s coverage is for those services, are important details. The numbers are indeed scary, given the Provider Charges of $50,231.25, and the Amount Paid of $0.00. Someone unfamiliar with EOB-ese might have a panic attack before getting to the important phrase “there is no liability on your part for these services” in Remark(s) Explanation 3.

“Statement of Account”

Here’s the summary bill from the hospital that covers the same services (my surgery), but this might only add to the potential for confusion.

The bill has slightly more detail than the insurer’s EOB, but not that much. It mostly seems to be to a series of magic incantations that take the starting amount – New Charges or Adjustments, $53,911.00 – and bring that down to an Amount Due of $50.00. My insurer paid $5,430.02, and there were Adjustments of $48,430.98, which leaves $50.00. On the one hand, hallelujah; on the other hand, what’s the story with that $48,430.98 “adjustment”?

If I didn’t have insurance, would I be on the hook for that whole $53,911.00? Probably, but it’s hard to know exactly. This is where the “chaos behind a veil of secrecy” that is healthcare pricing is most visible: hospital charges.

I learned a lesson from this bill, by the way: always ask for an itemized bill, not a summary bill. Ask for that during the admission process (if it’s a hospital), or at the medical office or testing facility during check-in.

Staying ahead of the healthcare cost curve

Here are my tips for figuring out your medical bills, and your EOBs, to ensure you get what you pay for, and only pay for what you get:

  • ALWAYS ask for an itemized bill, don’t just take a summary bill (the mistake I made with the billing for my own cancer surgery).

  • Review that bill, line by line. Make sure that it doesn’t have anything on it that you did NOT receive. Use CMS’s CPT code look-up tool to help you break down the blizzard of numbers. [CPT codes are the five digit service codes used by all medical providers; they’re in the column labeled Svc Code in the bill example above.]
  • Have your insurer’s Summary of Benefits documentation handy while you review the bill(s). That will be available on your insurer’s website.
  • Do not pay a bill until you get the EOB associated with those billed services.
  • Line up the EOB, and the bill, to make sure the dollars and the codes are correct.
  • Challenge any billed items that are for services you didn’t receive.
  • If services you received are listed as not covered by your insurer on your EOB, challenge that with your insurer’s customer service crew.

Yes, it takes work. And it’s a little crazy that the American healthcare system expects people, particularly sick people, to manage this blizzard of paper with scary dollar figures on it. But the only way to make sure you don’t pay more for your medical care than you should is to be proactive. It’s what empowered patients do.

Health Cost Literacy: “How much is that?”

The title of this post asks the $3.5 trillion-with-a-T question in American healthcare: how much is that? It often feels like healthcare is split into two camps, with one side working away feverishly to find more cures for life-threatening conditions like cancer and ALS, while the other side is working at an equally feverish pace to figure out just how many millions of dollars they can make of the latest breakthrough.

A recent example of this Tale of Two Healthcares was the roaring headlines about the first FDA-approved gene therapy, Kymriah (tisagenlecleucel), for leukemia. The business side of healthcare was ecstatic, pricing the drug at $475,000, which made Wall St. happy, and Novartis (the drug’s maker) ecstatic. The patient side of healthcare? Not so much.

Kymriah is an extreme example of healthcare pricing, but even trying to get a CT scan can turn into a trip down the rabbit hole, if you try to find out before the scan how much it will cost you. Asking “how much?” can seem like shouting down a well the first time you do it – you’ll hear an echo, because the person you’re asking will likely say “how much?” right back, in total shock at the question. However, asking questions is how we get answers, right?

Here are tips for asking “how much is that?” and getting meaningful answers:

  • Find out if your insurer has a cost-estimator tool. If so, use it. For everything required for your care. You’ll need the insurance billing code for the test, scan, or procedure (called the CPT code), so get that from your doctor’s billing office.
  • Use online price-check tools like Clear Health Costs or Fair Health Consumer to reality-check the pricing information you get from your insurer’s cost-estimator tool.
  • When your doctor refers you to a lab for testing, or an imaging center for scans, ask if they know what the cost is. They likely won’t at first, but the more of us who ask the question the more they’ll want to know the answer.
  • Call around to labs and imaging centers in your insurer’s network to ask about their cash price for the test or scan that’s been ordered for you. Depending on the cash price, you might be better off not using your insurance, and actually paying cash for the test or scan. If you have a high-deductible plan, you’ll need to assess which medical services are worth going off-the-books for if you haven’t yet met your annual deductible.

I know a lot about “how much is that?” because I was uninsured for five years after my own cancer treatment ended. I discovered that asking the question got me the answers I needed, and I could choose the providers that could give me a cash price for the mammograms and follow-up oncology services I needed. I’ve continued to use the simple question “how much is that?” every time a doctor has ordered tests or scans, because even with insurance, you’ll wind up with a bill for some part of the service.

If we all work together, asking “how much is that?” before receiving any medical service, we’ll start to shift the system, and the culture of healthcare. It takes a village, not just to raise a child, but also to change a status quo.

It’s your turn. Start asking.