Managing Long Term Financial Concerns

This video was originally published by Cancer Support Community on April 29, 2015, here.

My Life Line

This resource was originally published by MyLifeLine.org here.

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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.

Tips for Reducing Cost of Care

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

 

 

 

 

Living with a Myeloproliferative Neoplasm

This video was originally published by Cancer Support Community on May 26, 2015, here.

 

Managing Out of Pocket Expenses for Melanoma

This video was originally published by Cancer Support Community on August 24, 2015, here.

 

Lung Cancer: Coping With Unexpected Challenges

This video was originally published by Cancer Support Community on August 13, 2015, here.

Encore: Facing a Lung Cancer Diagnosis

This podcast was originally published by Cancer Support Community on November 17, 2015, here.

“Being empowered is choosing to adopt actions, behaviors, and attitudes that can help you regain a sense of control over your treatment and life with cancer,” excerpt from Frankly Speaking About Cancer: Lung Cancer. Part of being empowered means learning all you can about your specific type of cancer—what it is, how it affects your body, how it’s treated and what you can expect during diagnosis, treatment and beyond.

 

Frankly Speaking About Cancer: Join host Kim Thiboldeaux, President and CEO of the Cancer Support Community, for a weekly radio broadcast empowering listeners to live well with cancer. Every Tuesday, 4PM ET (1PM PT)

MyLifeLine: Learn About Clinical Trials

Editor’s Note: This post was originally published here on MyLifeLine.org. The mission of MyLifeLine.org is to empower cancer patients and caregivers to build an online support community of family and friends to foster connection, inspiration, and healing through free, personalized websites.

Learn About Clinical Trials

MLL ACT

Why consider a cancer clinical trial?

What clinical trials can offer, from the care you receive to the impact you can make.

Clinical trials offer a chance to receive investigational medicines or procedures that experts think might improve the treatment of cancer. This important option is not limited to people who have run out of choices. In fact, there may be clinical trials for every stage of disease in dozens of cancer types. In this video, patients and doctors share their perspectives on why joining a clinical trial may be an option worth considering.


“To have the opportunity to go on a clinical trial for a patient is extremely exciting.” —Sandra Swain, MD; oncologist


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Concern:
I don’t want to be a guinea pig for an experimental treatment.
The Truth:
Cancer clinical trials are developed with high medical and ethical standards, and participants are treated with care and with respect for their rights.

Concern:
I’m afraid i might receive a sugar pill or no treatment at all.
 The Truth:Cancer clinical trials rarely use placebo alone if an effective treatment is available; doing so is unethical.

Concern:
Cancer clinical trials are only for people with no other treatment options.
 The Truth:Trials can study everything from prevention to early- and late-stage treatment, and they may be an option at any point after your diagnosis.

Concern:
I’m worried that I won’t receive quality care in a cancer clinical trial.
 The Truth:Many procedures are in place to help you receive quality care in a cancer clinical trial.

Concern:
People might access private information about me if I participate.
 The Truth:In nearly all cancer clinical trials, patients are identified by codes so that their privacy is protected throughout and after the study.

Concern:
I’m afraid that my health insurance will not help with the costs of a cancer clinical trial.
 The Truth:
Many costs are covered by insurance companies and the study sponsor, and financial support is often available to help with other expenses; talk to your doctor to understand what costs you could be responsible for.

Concern:
Informed consent only protects researchers and doctors, not patients.
 The Truth:
Informed consent is a full explanation of the trial that includes a statement that the study involves research and is voluntary, and explanations of the possible risks, the possible benefits, how your medical information may be used, and more. Informed consent does not require you to give up your right to protection if the medical team is negligent or does something wrong.

Concern:
I’m afraid that once i join a cancer clinical trial, there’s no way out.
 The Truth:
You have the right to refuse treatment in a cancer clinical trial or to stop treatment at any time without penalty

How to know if a cancer clinical trial is right for you.

There are many factors to keep in mind when considering a cancer clinical trial.

As with any important decision, it’s a good idea to think about the risks and benefits of joining a cancer clinical trial. This video encourages you to ask your medical team about all of your treatment options, including cancer clinical trials. Trial participants, doctors, and patient advocates explain the factors you’ll want to keep in mind as you consider your treatment plan.


“I’ve always advised patients…when the circumstances weren’t urgent, to take time to understand their disease and to evaluate the alternatives.”  —Sandra Horning, MD; oncologist and chief medical officer


What to ask your doctor(s)

Asking The Right Questions Keeps You Involved In Your Care

A cancer diagnosis is often overwhelming, and it’s sometimes hard to gather your thoughts and know the right questions to ask. This video talks you through some of the questions it will be helpful to ask about your cancer, your treatment options, your doctor, and about whether participating in a cancer clinical trial is right for you.


“Talk to your doctor and say, ‘Tell me my full options.’ Raise questions. Be a pain in the neck. That’s what the doctor is there for.” —Arthur Caplan, PhD; medical ethicist


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Rules And Procedures Are In Place So That You Will Receive High-Quality Care

Before a single patient can join a trial, many different experts must approve every detail of the study—from why it’s being done to how often patients should be monitored. Once the trial begins, more unbiased experts provide oversight to check that the rules of the trial are being followed and patients’ rights are protected. This video features doctors and patient rights advocates explaining the high standards by which trials are developed and run.


“I explain…that when they’re on a clinical trial, they’re going to be followed very closely by…specific guidelines.” —Daniel P. McKellar, MD; surgeon and Commission on Cancer chairman


Informed Consent Describes The Study Process, Potential Risks And Benefits, And Your Rights As A Participant

If you are eligible and decide to join a trial, you will be required to review and sign the informed consent forms. This can be an overwhelming process, but it is how you will learn all the details of the trial, including the potential benefits and the possible risks, and give your permission to be treated. This video features patients, doctors, and patient rights advocates who offer tips and insights to help you navigate the process of informed consent.


“When I received the stack of papers…it made me realize this is really serious. But then…it was actually a good feeling to know that this was not something that was being done lightly.” —Rose Gerber; trial participant


Information And Support Are Close At Hand

Because so many people have been affected by cancer, there are many reliable and helpful resources to help you through your cancer journey. In this video, trial participants and doctors help you find the people and resources that may be helpful in educating you about cancer clinical trials.


“The first thing is to hold on tight and be optimistic and to get very engaged and educated about your cancer.” —Jack Whelan; trial participant


Reliable Resources To Help Along The Way

First, talk to your doctor

Your healthcare team is the best source for information about your treatment options, including cancer clinical trials. There are many questions you’ll want to ask your healthcare team when you’re ready to discuss treatment options. Print this helpful Discussion Guide and bring it to your next appointment so that you don’t forget anything important. Record your answers on the form and keep it handy for future reference.


Where to find information about cancer clinical trials

These clinical trial resources will help you find trials that might be right for you.


Support services

These trustworthy sources provide assistance with trial-related costs, which may not always be covered by insurance.

Practical support

Financial support

Additional nationwide support organizations


Don’t go it alone

There are millions of people just like you who are ready to ACT against cancer. These organizations provide advocacy, information, awareness, fundraising opportunities, and a community of like-minded people touched by cancer.

Frederique’s Lung Cancer Story

This post was originally published on MyLifeLine.org. MyLifeLine.org Cancer Foundation connects MyLifeLine logocancer patients and caregivers to their community of family and friends for social and emotional support. We provide unique communication and stress reducing tools that allow patients and caregivers to share their journey and focus on healing. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

Frederique was with her son when she started speaking strangely; she wasn’t finishing her sentences and her words weren’t making sense. She didn’t realize it was happening but her son was alarmed and contacted his dad and emergency medical services. The next day, Frederique learned she had tumors in her lung and brain. Her diagnosis was  Stage IV  lung cancer which had metastasized in the brain.

“We fear cancer so much as a society that when you find you have it, you just have to face it,” Frederique recalled upon learning her diagnosis. “The fear was gone.”

Two rounds of chemotherapy, two gamma knife sessions and three rounds of radiation were part of her treatment process over the two years she has been diagnosed , and she is now looking into a clinical trial.

Although she doesn’t know if she will ever be cancer-free, Frederique chooses to look at her cancer journey as an adventure, see the joy in her experiences and live a normal life. She does power yoga, exercises through hikes and walks, and even traveled to France, all while living with cancer.

“There is a disconnect with this diagnosis and how my body is doing. I really do live a normal life,” Frederique explained.

Frederique MLLEarly on, she created what she calls a “healing circle” to help her and her family throughout her cancer experience. She used MyLifeLine.org to share her story and coordinate volunteers.

“I think the technology is amazing. It helps me not only to receive support but also to give hope around me. Staying vibrant and positive throughout such a challenge seems to be inspiring for people. I am delighted that my experience can be of service that way,” she said.

Frederique’s advice for others facing a cancer diagnosis is to find a way to relieve the fear. “Cancer is such a fearful event, especially stage IV,” Frederique explained. “Find a way to ­not be scared of the disease. In my opinion, fear is detrimental to the healing process.” She keeps the fear at bay by meditating and connecting with the energy around her (yoga, chi gong, reiki), but she explained that anybody can find their own way of relieving the fear.

“I could live this journey in total fear and be in a dark mood all of the time, but then I would lose precious time. Yes, I have days where I am scared or sad but most of the time I prefer to live in joy,” Frederique said.

Thanks to the cancer, Frederique rediscovered herself, deepened her connections to others and shifted to a new understanding of the world. “I’ve never been happier, to be honest. I’m where I’m supposed to be now,” she reflected.