Empowering Patients and Care Partners
Update on the Safe Step Act and the HELP Copays Act
By Danielle Doheny, IMF Director, Public Policy & Advocacy
The journey of a patient with myeloma can be complicated. I know this from being a part of my dad’s journey with this disease. Thankfully, many different treatment options are available both to the newly diagnosed and to long-term survivors. Now, there are even newer approaches to treating myeloma that can be tailored to an individual patient’s unique disease! However, the access to the best treatments can be challenging. I want to share with you some of the access challenges, as well as the proposed policy solutions. The Safe Step Act and the Help Ensure Lower Patient (HELP) Copays Act would help fix these issues.
The Safe Step Act
Step therapy requires patients to try less expensive medications or treatments before accessing more costly – yet potentially more effective – options prescribed by their doctor. While step therapy is used to control healthcare costs, it often leads to delays in patients receiving the appropriate care, potentially compromising their health outcomes. This is a huge issue when it comes to treating cancer. For myeloma patients, it is crucial to have prompt access to the most effective and evidence-based treatment options.
The Safe Step Act (H.R. 2630/S. 652) aims to ensure that patients, including those with myeloma, have timely access to treatments prescribed by their doctors, especially in cases where the delay could have adverse effects on their health. The Safe Step Act would require insurance companies to implement a clear and transparent appeals process for patients and their doctors to request exceptions to step therapy protocols. This process would consider the specific needs and circumstances of an individual patient and ensure that the patient can receive the most appropriate treatment without undue delay.
The HELP Copays Act
The Help Ensure Lower Patient (HELP) Copays Act (H.R. 830/S.1375) tackles the burden of high prescription drug costs that patients face at the pharmacy. Many individuals with chronic conditions rely on life-saving medications, but exorbitant copayments can create financial strain. Non-adherence to the prescribed treatment can result in potential health complications for the patient. Such individuals depend on help in the form of copay assistance to help afford their medication, and it is essential that they receive the help they need.
Copay accumulators (also called copay maximizers or accumulator adjustment programs) are relatively new cost-containment measures employed by health insurance companies. However, copay accumulators have emerged as a significant obstacle for cancer patients seeking affordable access to life-saving treatments. Traditionally, copay assistance programs sponsored by drug manufacturers help patients cover the cost of expensive medications, ensuring that out-of-pocket expenses do not become prohibitive barriers to treatment. However, copay accumulators are designed to prevent drug manufacturer copay assistance from counting toward a patient’s deductible or out-of-pocket maximum, leaving patients to bear the cost burden alone. The HELP Copays Act bans the practice of copay accumulators and ensures that copay assistance helps those they are intended to assist – the patients.
The IMF Myeloma ACTION Team
As a society, we must strive to ensure that individuals battling cancer can focus on their recovery without being burdened by exorbitant medical costs. Patient advocacy promotes empathy and understanding about the challenges that myeloma patients face and helps educate legislators about these struggles. Becoming an effective advocate is much easier than most people imagine. It can be as simple as sharing your story with the decision-makers in your state or on Capitol Hill in Washington, DC. Advocating for yourself or for a loved one is so empowering.
The IMF’s Myeloma ACTION Team is here to help train you through webinars, virtual meetings, and written materials. You will gain a deeper understanding of the current legislative issues that have the biggest impact on the myeloma community. The IMF can train you to communicate your story and explain the myeloma community’s advocacy priorities to your elected officials. As a member of the Myeloma ACTION Team, you will engage in the following:
- Participate in quarterly team calls.
- Share myeloma advocacy news and alerts with your community.
- Share your personal myeloma experience with legislators.
- Share your experience with the IMF to help shape our advocacy priorities.
- Build relationships with your elected officials – the IMF will help you!
Your voice matters. You can make a positive impact on important policy issues, and the IMF will support you with the tools and information you need to be an effective member of the Myeloma ACTION team. YOU can make a difference!
To learn more about the IMF’s advocacy activities or to contact your legislators directly, visit advocacy.myeloma.org. To subscribe to the IMF Advocacy Newsletter, visit subscribe.myeloma.org. To learn more about how you can help, contact us at [email protected]. We welcome your engagement, questions, and ideas.
(This article was published in the 2023 Summer Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)