Dealing with Hair Loss
This video was originally published by Macmillian.org here.
We have ideas and information about wigs, hats, scalp care and more to help you deal with hair loss.
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.
More resources for General Health Info from Patient Empowerment Network.
This video was originally published by Macmillian.org here.
We have ideas and information about wigs, hats, scalp care and more to help you deal with hair loss.
You may not realize that diet, exercise, and cancer risk are connected. In fact, many cancer deaths could be prevented with a healthy diet and regular physical activity. The videos in the collection below explain how healthy choices can impact your risk, the truth behind cancer myths, and how to incorporate healthy behaviors into your busy life.
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:
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?
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.
This blog was originally published by Everyday health By Debra Fulghum Bruce, PhD, on April 8, 2019, here.
Sponsored by GoodRx
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.
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)
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.
These 12 surefire tips will help you save on prescription medications so that you can put the extra funds to other important uses.
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:
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.
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.
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.
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.
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.
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.
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)
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.
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:
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.
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)
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.
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!
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.
A drug marketed under a proprietary, trademark-protected name.
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.
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.
The amount of money that the insured must pay before an insurance company will pay a claim.
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.
Offered by drug manufacturers to consumers to reduce the price of their prescription drugs.
Used by payers to reduce premiums and out-of-pocket expenses.
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.
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 services allow individuals to receive prescriptions conveniently through the mail.
A type of Medicare health plan offered by a private company that contracts with Medicare.
An optional program to help Medicare beneficiaries pay for prescription drugs.
A medicine that does not require a prescription.
Offered by pharmaceutical companies, these programs provide free or low-cost prescription drugs to patients who lack health insurance or prescription drug coverage.
A money-saving program that can lower drug and supply prices for people who don’t have insurance.
A group of pharmacies that give insurance plans a larger discount.
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.
Encompasses a wide range of technologies to deliver virtual medical and healthcare services.
Also called pharmacy benefit managers (PBMs), they are paid to negotiate prices between pharmacies and large insurance companies.
Online pharmacies that have passed rigorous reviews by the National Association of Boards of Pharmacy (NABP). Also referred to as VIPPS-Accredited.
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.
This resource was originally published by American Cancer Society here.
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.
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.
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.
This resource was originally published by Pan Foundation here.
Quick tips, factsheets, checklists and information to help you navigate the healthcare system. Learn More
A quick reference for some of the most commonly used terms in healthcare. Learn More
A number of outstanding organizations can connect you to a supportive patient community and provide services and resources related to your diagnosis. Learn More
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
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
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
Looking for additional information? Many government health programs have extensive online tools and resources across a variety of health topics. Learn More
Interested in learning about clinical trials? Several government and nonprofit organizations provide information on and searchable databases of ongoing trials. Learn More
This resource was originally published by the American Cancer Society here.
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.
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.
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.
This podcast was originally published by Cancer.net podcasts on October 23, 2018, here.
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.
[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.
This video was originally published by LiveStrong on February 10, 2010, here.
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.
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.
Begin to look for ways to find coverage if you have concerns about having no health insurance. Check out options such as:
Group health plans are offered through groups with employees or members such as:
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.
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.
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:
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:
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:
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.
Group and individual disability income plans provide benefits if you are not able to work. There are two types of disability policies:
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.
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.
This video was originally published by Livestrong.org here.
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.
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:
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.
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.
This video was originally published by Cancer.gov on September 3, 2019, here.
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:
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:
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.
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.
[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.