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CLL Society Joins Rare Disease Groups in Asking CMS to Ensure Development of Innovative Rare Disease Treatments Isn’t Hampered by Implementation of the New Direct Government Price Negotiation Legislation

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We have long heard about innovative treatments not reaching patients in countries where those governments set the prices of drugs. Drug development also lags in those countries.  In the United States, CLL / SLL patients have often had the earliest and best access to novel therapies. We want to ensure that this continues while ensuring patients’ out-of-pocket expenses are limited. So, when Congress passed a law last year dipping a toe into direct government price negotiations with drug companies, it was the first step in doing what other countries have done for some time.

CLL Society supports lower drug prices and appreciates that the government is seeking to leverage its negotiating power on behalf of Medicare patients. However, we are also deeply concerned that government interference does not lead to the consequences that have been seen in other countries. This includes patients not being able to have access to necessary treatments.

We not only wrote our own comment letter to CMS (Centers for Medicare and Medicaid Services), but we also signed onto a letter by the Haystack Project (a nonprofit enabling rare disease patient advocacy organizations to address systemic obstacles to patient access). We urged CMS to work with the patient community to both safeguard innovation in rare disease treatments and protect existing access to treatments. 

Download the letter