Let's Ensure Patients Keep Access to Needed Treatments
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Access to affordable cancer treatment is a top priority for CSC. Will you add your voice to help ensure patients have access to the medications they need? Here's what to know, and what you can do.
We are dedicated to advocating for policies that support patients — especially those who have been diagnosed with cancer. One focus of our advocacy work is the Medicare Drug Price Negotiation Program (MDPNP), which was established through the passing of the Inflation Reduction Act of 2022 (IRA). This program allows Medicare to negotiate prescription drug prices directly with drugmakers for the first time.
Over the past two years, CSC has been focused on:
- Educating patients and other communities on the impacts of the IRA.
- Facilitating discussions between stakeholders on the potential unintended consequences of the IRA that may impact patient access to life-saving and life-enhancing drugs.
- Advocating for increased patient engagement throughout the MDPNP process.
CSC’s work in this area emphasizes the importance of amplifying patient and caregiver voices in policy discussions and building an infrastructure for engagement between decision-makers and the public — including people impacted by cancer, providers, and others — to gather feedback, monitor the impacts of IRA policies, and break down barriers to care.
Throughout the Medicare drug negotiation program, advocates (including patients) have actively engaged with lawmakers, the Centers for Medicare & Medicaid Services (CMS), and other stakeholders to ensure their perspectives are meaningfully incorporated and that patients do not lose access to critical treatments.
One concern that patient and caregiver advocacy groups have about the program is the difference in when two types of treatments — small and large molecule drugs — are eligible for price negotiation.
- Pills (also called small molecule drugs) are simpler to produce and often less expensive than other treatments. Pills are an important treatment for cancer and other illnesses due to the convenience of taking pills at home. Medicare can negotiate prices on pills 7 years after approval by the U.S. Food & Drug Administration (FDA), the federal agency responsible for reviewing and approving new drugs and treatments.
- Biologics (also called large molecule drugs) are often administered in a doctor’s office and are eligible for Medicare negotiations 11 years after FDA approval.
The 4-year difference in these negotiation timelines could have a big impact on the availability of new pills. Due to the shorter negotiation timeframe for pills, drugmakers may invest less money into the research of new pills, as they have less time to recover the massive costs of research & development (R&D). Less investment in small molecule drugs could result in limited innovation of these treatments, which may decrease access for patients.
In April, President Trump signed an executive order directing Robert F. Kennedy Jr., the Secretary of the U.S. Department of Health and Human Services, to work with Congress to address the difference in negotiation timelines between small molecule drugs and large molecule drugs (a disparity often referred to as the “pill penalty”).
Fortunately, earlier this year, a group of lawmakers reintroduced a bill in the House and Senate that would ensure patients don’t lose access to the pills they need to manage daily symptoms. The bill, called the Ensuring Pathways to Innovative Cures (EPIC) Act (H.R. 1492/S. 832), would allow both pills and other treatments, like biologics, to be eligible for negotiations at the same time. This would help ensure that drugmakers continue to invest in the research and development of new pills, especially for hard-to-treat cancers that may not have FDA-approved treatment options yet.
Find Support
Have a question or concern about how these policies may impact you or a loved one during cancer treatment? Our patient navigators are here to help.
Recently, CSC sent a letter to Congressional leaders urging lawmakers to support the EPIC Act and to prioritize patient engagement when considering healthcare policies. The letter was signed by 61 advocacy organizations, representing the viewpoint of a diverse community of individuals including patients, survivors, and caregivers impacted by cancer and other complex conditions.
The letter reads, in part:
“We cannot take steps that will stunt the progress made in medical advancements, particularly for cancer and other difficult diagnoses. We must continue to ensure that all patients have access to the treatment best suited for them and prescribed by their trusted medical professionals, and that policies accurately reflect the needs and input of patients who will be most impacted by them.”
Read the letter and full list of signatories.
Here's What You Can Do
It is critical that patients have uninterrupted access to the treatments they need. Lawmakers play an important role in ensuring that patients do not face negative consequences and barriers to care because of healthcare policy changes.
Your voice can make a real difference. If you are living with cancer, or want to stand with those who are, join us to help people get the cancer medications they need.
Take Action Now: Support the EPIC Act
A Note of Appreciation
CSC extends our gratitude to Representatives Greg Murphy (R-NC), Don Davis (D-NC), and Richard Hudson (R-NC), and Senators Thom Tillis (R-NC), Ted Budd (R-NC), Marsha Blackburn (R-TN), James Lankford (R-OK), and Steve Daines (R-MT) for championing the EPIC Act and for their efforts to ensure patients can access the treatments they need.