Lisa • January 12, 2024
Beware of “Alternative” Funding Programs When Choosing your Health Plan

By: Lisa Salberg, Founder and CEO Hypertrophic Cardiomyopathy Association

A new health insurance workaround could endanger the health of patients, particularly those with chronic illnesses like hypertrophic cardiomyopathy. This “new” concept is done in an attempt to cut costs for employers. This scheme is dubbed as the “alternative funding program.”

In the context of hypertrophic cardiomyopathy (HCM) — a heart condition in which the heart muscle becomes abnormally thick — timely and appropriate treatment is especially critical. HCM is a leading cause of sudden cardiac death in young athletes and can cause heart failure in patients of any age. Under these alternative funding programs, third-party vendors advise employers to exclude higher-cost specialty medications, which could include medication for HCM patients, from their employees’ benefit plans. They then steer these patients to apply to patient assistance programs, avoiding health plans’ financial obligations to pay for medications.  Patient access programs are primarily designed for individuals who are uninsured or financially disadvantaged.

Vendors advocate for these programs as a mutual benefit. Yet, the reality unveils a slew of challenges while diverting the patient assistance funds directly to insurance plans and not to patients. 

Detriments to Patient Health with HCM

Misusing programs, especially ones provided by patient assistance nonprofits or pharmaceutical companies’ foundations, leads to logistical, medical, and financial complications. These models benefit the payor and penalize the patients. 

For HCM patients, the process of applying and receiving approval for patient assistance could delay access, increase risk, and prolong symptom relief. Without their medications, HCM patients can experience increased pressure in their hearts and severe symptoms. They are also at risk for arrhythmia, advanced heart failure, or stroke. Delays in care can be catastrophic. 

Furthermore, since these alternative funding programs fall outside the purview of regular health plans, the payments made by HCM patients toward their medications do not contribute to their annual insurance deductible. Consequently, they might end up paying significantly more throughout the year. 

As an example, in a traditional plan, if a medication costs $1,000 per month, the insurance company may pay $800, and the patient pays $200 in copays and deductibles. In an alternative funding model, the patient may pay $200 for that same $1,000 medication, but the insurance company pays $0, and the patient assistance program pays $800. The $200 paid by the patient does not count toward their copay, deductible, or out-of-pocket maximum for the year, thus resulting in them paying more for their healthcare over the year. 

The Bottom Line for HCM Patients

Patients with hypertrophic cardiomyopathy need timely access to their prescribed treatments. These alternative funding schemes introduce unnecessary delays and exploit the financial assistance systems meant for genuinely needy individuals. While employers might dodge the bullet of high prescription drug prices, they’re still incurring charges from the alternative funding vendors. Meanwhile, the labyrinthine drug pricing system only becomes more convoluted and less patient-friendly.

Patients with HCM and other genetic heart condition-and frankly, all Americans-deserve the consistent access they anticipated when they signed up for their health plan. The “alternative” touted by third-party vendors is alarmingly inadequate for them and overly burdens patient assistance programs. We believe legislative efforts should be engaged to outlaw this dangerous practice. 

To learn more, you may wish to review these links: 

HCMA Blog

April 15, 2025
It is hard to believe the first quarter of 2025 is in the history books. In the space of hypertrophic cardiomyopathy and thick heart muscle disorders, the distance between the promise and the delivery of a reality freed from burden of disease is closer than it has ever been, not only in the United States but throughout the world. Unfortunately, we are navigating through some challenging health policy times, which will impact a large percentage of those with the diseases we seek to serve. While we navigate these challenging waters together, we remain committed to ensuring safe, accessible, affordable, healthcare while ensuring the rights of those with disabilities are maintained. Last month, I attended two large conferences - one held in Stockholm, Sweden the other Chicago, Illinois. The research communities worldwide are holding their breath, waiting to see how we will move forward, even as we continue to develop new therapies, treatments and, even potentially, cures. It has never been more important to keep research moving, as we are so close to so many amazing improvements in our ability to care for those with thick heart muscle disorders, including HCM in all its forms, Amyloidosis, Fabry’s disease, Danon disease, and RASopathies. There was amazing science presented at the American College of Cardiology, where we warmly welcomed new president, Dr Christopher Kramer, the original director of the hypertrophic cardiomyopathy center at University of Virginia. We look forward to his leadership and wish him well in his challenging tasks ahead. Later this month we will be in Orlando Florida - please register and join us for this wonderful Bighearted warrior tour in person with our friends at AdventHealth and the incomparable Dr. Marcos Hazday. I even understand that there's some carpooling being organized from the Tampa area. If you're interested, reach out to the office and we will connect you. Maybe, the most impactful thing that will happen in the month of April is that we will conduct our second visit to Capitol Hill. Our lead topic this year is something you have heard us talk about at many prior meetings of the HCMA and podcasts; the generic drug quality issue. We are proud to be partnering with David Light, Co-founder and President of Valisure, and retired Colonel Vic Suarez, to ask House and Senate members to support the inspection of all generic drugs purchased by the Department of Defense and the Veterans Administration and make results of these inspections open for public use. Secondly, we are seeking rational oversight of health insurance companies’ abuse of prior authorizations and step therapy requirements. These issues cost an estimated 1.3 billion dollars a year and provide nothing to keep a patient safer or a physician's office running more efficiently. Common sense tells us to not waste money where there is no return. Additionally, prior authorizations and step therapies can keep patients sicker longer, ultimately costing the healthcare system more money. Our briefing will educate Representatives to act in an informed manner when moving policies that impact us all. You can watch us live at our briefing Wednesday April 9th 5:00 to 7:00 p.m. on Vimeo: https://vimeo.com/event/5043266 If you wish to get involved or more informed on any of the issues above, I encourage you to visit the website, 4hcm.org , or reach out to the office and the staff will be happy to assist you. On the day before I head out to Washington DC, I will leave you with this one thought - we have come a really long way in our understanding of HCM over the past 60 years. We have increased the lifespan of those with HCM, through collaborative research and implementation of best practices in an organized fashion throughout this country. We have worked so hard to end suffering for so many, and we are succeeding in our shared goal to outsmart hypertrophic cardiomyopathy and other thick heart muscle disorders. It is important to continue the research into all aspects of these diseases, including the biological, the clinical, burden of disease measurements. System improvements, positive impact of timely diagnosis and treatment, and the value to society of all of these big hearts being here, keeping their families whole. So we're off to DC to try to educate others about what it really means to live in our ecosystem. Best wishes, Lisa
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