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Advocacy Update

Advocacy Update
November 2015
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Clinical Pathways Presentation Now Available on Our Website!

Did you miss one of the Advocacy Team’s presentations on clinical pathways? Don’t worry! You can check out the full presentation via webinar recording here  or watch Taylor Patton present it on YouTube here. Clinical pathways are new tools used by health insurance companies in order to manage and predict the cost of care for patients. Pathways prescribe the course of treatment and predetermine the type and timing of specific therapies. It’s important to understand how pathways work and if you are on one so you can make informed decisions about your treatment. Our short presentation goes over how pathways are developed and equips you with questions to have ready for your doctor at your next visit. 

Educational Resources

Affordable Care Act FAQ

Medicare and the Affordable Care Act

Multiple Myeloma Insurance Questionnaire

The Financial Toxicity of Cancer

One often-overlooked side effect of cancer care is one that doesn’t affect your health, but rather your finances. Due to the diversity of health insurance plans, doctors may not always know the high costs associated with certain treatments when they prescribe them, and the impact it could have on the patient’s quality of life and the delivery of the highest quality care.  However, there are recent initiatives that encourage doctors to be more aware of these issues, and track financial consequences of  treatments the way they  track the treatment’s effect on patients’ health.

One thing patients can do to help their physicians learn about financial toxicities is to participate in the new registry system that’s been created on the Cost of Cancer Care website.  You can look at treatment-specific resources and the foundations and organizations that can help you if you are experiencing financial difficulties.  Additionally, you can fill out the brief questionnaire and volunteer to participate in the registry research study so more can be known about the financial toxicity of treatments.

The IMF is working to help reduce the out-of-pocket costs to patients for oral anticancer medications through their efforts on HR 2739 and S 1566, the Cancer Drug Coverage Parity Act. If you haven’t already emailed your US Senator or Representative, please do so TODAY! 

Take Action on Federal Legislation

Support Oral Parity in the Senate

Support Oral Parity in the House 

Part D Beneficiary Appeals Fairness Act

Increase NIH Funding

Support National Myeloma Awareness Month 

IMF Participates in OVAC Lobby Day 

Earlier this month, IMF advocacy team member, Taylor Patton  advocated  with One Voice Against Cancer (OVAC) for adequate funding for both the Food and Drug Administration (FDA) and National Institute of Health (NIH).  

Of chief concern was ensuring that FDA and NIH  can continue their work in researching and approving new cancer therapies, treatments, and medical devices. In recent years, congress has  passed a series of continuing resolutions that funded the government at the withstanding funding levels as opposed to an omnibus  appropriations bill that would allow for increased budget caps  for several agencies   and programs. Consequently, the NIH has seen a gradual 22% decrease in  purchasing power since 2003. If funding had risen with inflation, the NIH  would currently be  receiving an extra $9 billion in additional resources.

 Therefore, OVAC met with members of the appropriations committees to ask for a 10% increase in funding for the NIH and urge mandatory funding for both the NIH and FDA through  fiscal years 2016 and 2017. With the advent of the 21st Century Cures bill that passed the   house earlier this year and President Obama’s Precision Medicine initiative, a strong NIH and FDA will be crucial to ensure that cancer patients continue to receive new, innovative treatments that improve their lives. Through its work with OVAC, the IMF hopes to see     increased funding and dedication to the science of saving lives. 

Additional Resources



Oral Chemo Parity Map

FDA Overseas Programs are Vital Resource for Consumer Protection

Since 2009, U.S Food and Drug Administration (FDA) and European Medicines Agency (EMA) have strengthened collaboration through the exchange of dedicated liaison officers and by engaging in mutual scientific interests in such areas as advanced medical therapies, biosimilar medicines, blood products, orphan products, and veterinary medicines. To learn more about the FDA overseas programs in Europe and other parts of the world, click here

Fun Facts!

The average person walks the equivalent of twice around the world in a lifetime! 

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