This is the second post in our 2-part series on the financial toxicity, or financial burden, of cancer treatment. In the first post, we discussed what financial toxicity is and some of the many ways it comes into play. We also looked at how the financial burden of cancer impacts our physical and emotional health and who is most affected.
So how do we tackle this complex problem? What needs to be done to make things better? And how do we cope right now?
There are many issues that contribute to the financial burden of dealing with cancer. Therefore, action is needed on many fronts. Discussions about what needs to be done tend toward three main areas.
The first is policy changes. Ideally, these should be made at the national level where they can have the most impact.
Then there’s the role of medical providers. Doctors and hospitals have an essential role in addressing financial toxicity as part of providing care to their cancer patients.
And finally, for those dealing with cancer treatment and financial toxicity, there are resources that can provide valuable assistance while we continue to advocate for long-term solutions.
These are a few of the issues and proposals being talked about now where policy change at the national level could have a big impact in reducing financial burden for cancer patients.
Drug pricing – Many countries have policies to ensure that drug prices remain fair and affordable. But that is not the case in the United States, where drug prices are typically based on “what the market will bear” rather than the value that the drug provides. That is why average U.S. prices for prescription drugs are 2.5 to 3.5 times what they are in other developed countries and list prices keeping rising even without improvements in the drugs.
Taking federal government action to lower prescription drugs prices is rated as a top policy priority by a large majority of the American public from both major political parties.
A 2018 report by the President’s Cancer Panel said that the prices of cancer drugs need to be better aligned with their value as a critical part of making them affordable for patients. Among other recommendations, the panel recommended that some form of value-based pricing for cancer drugs be adopted, similar to what has been done in other developed countries. Austin Frakt of the New York Times Upshot Blog has written an interesting piece on implementing value-based pricing.
Coverage of oral medications – Many of the newer, targeted cancer medications are given in pill form rather than intravenously at the doctor’s office or hospital. While pill form is more convenient for patients, the out-of-pocket costs are often much higher, especially for seniors on Medicare’s prescription drug program.
A change in policy to allow the Medicare program to negotiate the prices it will pay for prescription drugs (which it is currently prohibited from doing) is one approach that has been proposed to address this problem. Diane Mapes of Fred Hutch News Service has written about the issue of Medicare prescription drug pricing and its life-threatening impact on seniors.
Access to care for metastatic breast cancer – Individuals with metastatic breast cancer, cancer which has spread outside the breast, are often unable to work. As a result, they may loose their health insurance coverage just when they need it most. Care for metastatic cancer is intensive and the costs are very high, making it extremely difficult for someone without insurance to pay for their care.
A person in this situation can apply for Social Security Disability status and Medicare coverage. But once they receive approval for these coverages, they face lengthy waiting periods totaling almost two and half years. The Metastatic Breast Cancer Access to Care Act, which I wrote about in this post, would cut the red tape and waive those waiting periods.
How involved are doctors in helping their patients manage financial toxicity? What can and should doctors do to help their cancer patients deal with this adverse effect of cancer treatment?
Over 70% of women who worried about finances in a large 2018 study of early stage breast cancer patients indicated that their physicians and staff did not help.
Doctors can’t be expected to know the out-of-pocket costs to each patient of every medication being considered. But the newer cancer medications clearly come with the risk of financial toxicity.
In addition, people who have never had major health problems before their cancer diagnosis often aren’t aware of how extremely expensive cancer treatment is. They need to be informed early on of what to expect in terms of cost so they can make plans to manage financially.
The American Society of Clinical Oncology (ASCO)’s guidance statement is very specific about the role of oncologists in discussing the costs of care with their patients:
ASCO affirms the critical role of oncologists in addressing the cost of care with their patients. Given the potential impact of diagnostic and treatment out-of-pocket expenses on patients and their families, oncologists must assist patients in integrating cost considerations into their treatment decision making. ASCO believes that communication with patients about the cost of care is a key component of high-quality care.American Society of Clinical Oncology Guidance Statement: The Cost of Cancer Care
ASCO has published a value framework (updated in 2016) as a tool to help patients and physicians select high-value treatments for individual patients.
Some oncology offices and hospitals have financial navigators available to assist patients with managing the costs of their cancer treatment. These are a great resource (more on that below).
Resources for Patients
It shouldn’t be the responsibility of those dealing with cancer to try to figure out how to afford their treatment. But, in the absence of coordinated action to solve the underlying issues, patients are often left having to search for answers.
If you’re dealing with financial toxicity right now, where should you turn? There are several types of resources that can be very helpful.
Navigators: The best place to start, if possible, is with a financial navigator. One may be available to assist you through your oncology office or your hospital. Be sure to ask about this with your medical providers, even if you don’t necessarily think you’re going to have financial issues. It’s best to start thinking about these matters as early as possible. A nurse navigator or social worker would also be able to direct you to people who can help.
One of the first things a financial navigator will do with you is take a close look at any health insurance coverage you have. They will help you to understand what portion of the costs for the tests and treatments that you need will be covered by your insurance and how much you’ll have to pay yourself.
Your financial navigator will then explore with you various options for paying your out-of-pocket costs, as well as related expenses such as transportation costs or living expenses while you’re in treatment, if help is needed in those areas.
Options that may be explored include foundations, nonprofit organizations and pharmaceutical company programs. And a financial navigator will assist with the paperwork for applying to these kinds of programs. Navigators can also help with the paperwork related to accessing your insurance coverage, such as obtaining any necessary pre-approvals.
Nonprofit organizations: There are many foundations and other nonprofit organizations that provide support and financial assistance to cancer patients. Here are a few that are good places to start.
Cancer Care – This organization has oncology social workers who can help you find resources, and could be a good place to start if you don’t have access to a financial navigator. Their website has a searchable financial resource database that is easy to use and can help with finding national and local resources. The organization also provides limited direct assistance.
Cancer.net – This website has lots of information about a wide range of resources for financial assistance. Included are national and local service organizations and organizations that assist with medication and treatment costs, housing costs, travel expenses or legal expenses.
Patient Advocate Foundation Co-Pay Relief Program – This program provides direct financial assistance with co-pays, co-insurance and deductibles that are required under your health insurance for medications that have been prescribed to treat or manage your disease.
The Pink Fund – This organization provides short-term financial aid for breast cancer patients in active treatment who were working at the time of diagnosis and are dealing with a loss of income as a result of their diagnosis. The fund provides aid with meeting critical expenses for housing, transportation, utilities and insurance.
Drug company patient assistance programs: Many of the major pharmaceutical companies have programs that provide medicines for free or at low cost to patients who are unable to afford the medications that have been prescribed by their doctors.
A major criticism of these programs is that they enable drug companies to keep their prices artificially high. They are a workaround–not a solution–but these programs are an important resource at this time for many patients. Here are two resources for accessing this type of program.
NeedyMeds – This website enables you to search under the name of a specific drug that you’re looking for assistance with (either the brand name or the generic name). The search results typically include a link to the pharmaceutical company’s patient assistance program website, if a program is available for that drug, contact information and an enrollment form that can be filled out and submitted directly to the pharmaceutical company.
PhRMA’s Medicine Assistance Tool – This online search tool was created by the Pharmaceutical Research and Manufacturers of America (PhRMA) to provide information about individual company financial support programs for individuals who don’t have health insurance or don’t have adequate prescription drug coverage.
We’ve been hearing about the problem of financial toxicity for years. The impact is enormous and only getting worse without comprehensive action.
Be sure to let your elected officials know these issues are important to you. And stay tuned. We’ll continue to follow major developments here.
The Financial Toxicity of Cancer: A Problem That Is Not Going Away
Cancer and Health Policy: Some Things I’m Watching
Why Do New Cancer Drugs Cost So Much?
Breast Cancer: Are We Still Making Progress?
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