2024 Medicare Changes

Living with a rare disease can be challenging, both emotionally and financially. The cost of specialty medications, such as immunoglobulin therapy, can be astronomical, leaving many patients struggling to afford the treatment they need to manage their condition. However, there is a silver lining on the horizon. For 2024, Medicare implemented changes that bring hope for people with rare diseases, mostly in the long-term out-of-pocket cap for specialty pharmacy medications. In this blog, we will explore the impact of these changes, along with more to come, and how they can improve the lives of individuals living with rare diseases.

Breaking Down the Benefits: The Promise of 2024 Medicare Changes

As we delve deeper into the changes coming to Medicare in 2024, the promise of a brighter future becomes clearer for individuals living with rare diseases. These changes are not just minor tweaks, but rather a significant shift in the landscape of healthcare. While on the surface deductibles rose slightly, significant cuts in other areas provide for a broader treatment option for specialty medications.

In addition to increased at-home services for immune-compromised persons (like coverage for health and well-being coaching services), 2024 is the last year for the "donut hole". While under Medicare you are responsible for 25% of the cost towards covered medications when you spend between $5030 and $8000, this donut hole gap is smaller than previous years and there are more assistance funds available to help decrease the cost burden.

Even more impactful, is the expansion of the Low-Income Subsidy (LIS) or "Extra Help" program that began January 1, 2024. Medicare Advantage and Part D changed to provide the full low-income subsidy to those who currently qualified for just the partial subsidy, immediately improving access to affordable prescription drug coverage for low-income individuals. Those that now qualify for Extra Help pay $0 deductibles, $0 premium for Part D drug plans, and $0 Part D late enrollment penalty. This is key for those who experience a rare disease diagnosis prior to the need for Part D assistance.

For those that do not qualify for LIS or Extra Help, the elimination of Part D coinsurance will mean thousands of dollars saved on highly expensive covered medications. Prior to this year, Medicare Part D enrollees paid 5% (or a copayment) towards the cost of covered drugs after reaching the catastrophic phase, beyond the donut hole. Starting in 2024, patients with Medicare Part D pay nothing for covered drugs after this threshold. Medicare Part D reform, more specifically, creates a cap of around $3,250 on total prescription out-of-pocket costs. While this is a slight increase over 2023, it is still less than the typical cost of a singular treatment of immunoglobulin therapy (for a person with CIDP, for example) and the extent of what you pay after reaching that threshold- No more 5%!  In 2025, this cap reduces to $2000, and anyone can sign up for a monthly payment plan, regardless of income.

Imagine a world where individuals with rare diseases can focus on their health without constantly worrying about the financial strain. With this long-awaited change, the barriers to accessing life-saving treatments will be dismantled, and the urgency of securing proper care will no longer be overshadowed by financial concerns. For the first time, individuals with rare diseases can envision a life where their condition doesn't define them.

Access to Innovative Treatments: A Ray of Hope for the Rare Disease Community

In the past, patients with rare diseases often faced limited options when it came to treatments. Many innovative therapies were prohibitively expensive or not covered by insurance, leaving patients feeling discouraged and hopeless. However, with the forthcoming changes in Medicare this year and next, a ray of hope is shining through.

While not without some down-side (Medicare enrollees still do not qualify for drug manufacturer assistance programs, the Part D cap does not apply to drugs covered under Medicare Part B or medications not listed on the Part D plan), the overall impact to the rare-disease community is certainly improving access.  This mostly has to do with requirements on specific payer plans:  Medicare Advantage plans, fee-for-service and managed care Medicaid and CHIP programs, and Affordable Care Act marketplace plans.

New rules issued by the Centers for Medicare and Medicaid Services (CMS) focused on these insurance plans and will require them to streamline the prior authorization (PA) approval process.  For those of us facing rare disease diagnosis and treatments for the first time, we understand the inordinate burden and bureaucratic delays associated with getting vital treatments approved quickly.   These rules will require payers to implement an electronic PA process, shorten decision response times, and require them to provide a reason for denying a prior authorization request- leading to cleaner and faster appeals for approval.

The impact of this timely access to innovative treatments cannot be overstated. It has the potential to revolutionize the lives of individuals with rare diseases, offering them the chance for better health outcomes sooner, leading to longer improved quality of life potential. The future's looking brighter than ever before for the rare disease community.

Uniting Voices: The Power of Advocacy in Shaping Medicare Policies

Advocacy plays a crucial role in promoting change and ensuring that the voices of those affected by rare diseases are heard. Over the years, patient advocacy groups, grassroots organizations, and passionate individuals have tirelessly campaigned for improved access to treatments and support for the rare disease community.  See our prior blog posts for discussions of these groups.

Their efforts have not gone unnoticed. The upcoming changes in Medicare reflect the collective power of these advocates, who have shared their personal stories, lobbied policymakers, and fought for the needs of rare disease patients. Their dedication and determination have brought us to this pivotal moment.

We want to thank all of our industry partners for joining the cause to champion better access, better coverage options, and be a stronger voice for patients with rare and debilitating diseases.  We celebrate the power of unity and the transformative impact it can have on healthcare policies.

Moving Forward with Optimism: Embracing the Silver Lining

As we continue our exploration of the changes in Medicare, and how they are bringing hope for people with rare diseases, let us move forward with an optimistic mindset. While imperfect, It is essential to embrace the silver lining that these transformations are bringing to the healthcare landscape.

With improved access to specialized care, individuals with rare diseases can now envision a future filled with possibilities and opportunities. Equally important, their voices are heard and action and access to address newly diagnosed persons, is continuing. 

In the face of adversity, we have seen the human spirit shine brightly. People with rare diseases are showcasing incredible resilience, determination, and courage. They are inspiring others, raising awareness, and paving the way for a more inclusive healthcare system.

Together, we can celebrate the triumphs, embrace the advancements, and support each other in creating a brighter future for all.  We look forward to being a part of the solution!

For more information on Medicare changes, feel free to reach out to us:


Or visit Medicare.gov (1-800-MEDICARE)

Subscribe to our Mailing List

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.
Latest POSTS