How a National Risk Pool Can Transform Gene & Cell Therapies

December 6, 2024

For patients suffering from rare, debilitating diseases, cell and gene therapies offer a source of hope. These innovative treatments are tailored to individual patients’ DNA, which makes them uniquely effective. But there is one major problem – the staggeringly high price tag.

Look at sickle cell disease. Two new therapies, Casgevy and Lyfgenia, offer a path to a healthy future, but they cost $2.2 million and $3.1 million respectively. And that cost is for just one patient – the overall cost of providing these groundbreaking therapies to all Americans with sickle cell disease would be more than $200 billion annually.

The impact of these treatments’ high price tags doesn’t only affect those living with the disease. When health plans are asked to cover these sky-high costs, they are often forced to raise premiums for all consumers. Adding to the localized burden, genetic diseases can affect multiple relatives (often on the same health plan), who may access the same expensive therapies. Even a small number of individuals requiring these treatments could drastically impact a plan’s financial landscape and, in turn, increase the cost to payers. As regional, nonprofit plans serving smaller populations, ACHP member companies are particularly vulnerable to financial challenges and are facing down serious risk from unchecked cell and gene therapy drug costs.

Affordability of health insurance requires spreading risk across the population, allowing access to expensive treatment for those who need it without creating financial barriers to entry. When it comes to rare diseases, spreading risk at the community level is not enough to mitigate the exorbitant costs of cell and gene therapies. Instead, risk must be spread more broadly to level out affordability for all.

That’s why ACHP is advocating for a solution: a national risk pool for cell and gene therapies. We have called on Congress to establish a risk pool, which will provide the resources to treat these rare diseases, making them significantly more affordable. The cost of cell and gene therapies would no longer be crushing, as the weight would be distributed amongst all health insurers. A national risk pool not only eases the financial burden of these treatments, but ties payment to improved patient outcomes, encouraging providers to focus on the most effective treatment strategies. This helps health plans ensure patients receive excellent quality care at a manageable cost.

Access to affordable, highly effective cell and gene therapies would be life-changing for those suffering from rare diseases, and the establishment of a national risk pool would enable the health care system to provide such access. It’s simple – now that the revolutionary technology to combat rare, debilitating diseases exists, why wouldn’t we make it as accessible as possible to those who need it most?