Register now:

ICER’s Virtual Public Meeting for Parkinson’s Disease

ICER will host a virtual public meeting to discuss a treatment for Parkinson’s disease, tavapadon, on October 1st.

An independent appraisal committee will review the findings of ICER's Evidence Report, hear further testimony from stakeholders, and deliberate on the treatment’s comparative clinical effectiveness, benefits beyond health, and long-term value for money. Register here.

MUST READS

Secret contracts reveal undisclosed terms in Trump’s drug-pricing deals

The Washington Post

Pfizer, Lilly 'most favored nation' deals to give US share of revenue from raised foreign prices

Endpoints News

The Trump administration’s confidential deals with pharmaceutical companies to lower U.S. drug prices include inducements to raise drug prices overseas and promise protection from President Donald Trump’s tariffs, according to documents shared with The Washington Post.

The documents, obtained through Freedom of Information Act lawsuits, detail negotiations between the administration and the pharmaceutical giants Pfizer and Eli Lilly. Both companies agreed to voluntarily cut some U.S. prices last year after negotiating with Department of Health and Human Services officials, and Trump celebrated the deals at the White House.

Endpoints News also reported that the drug pricing deals that Pfizer and Eli Lilly signed suggest the companies will give the government a share of increased revenue they generate from raising prices abroad.

Medicaid GENEROUS Model Gets All States To Participate As Key Details Remain Unclear

Pink Sheet

President Trump announced that all 50 states, Washington D.C., and Puerto Rico will participate in the GENEROUS Medicaid drug pricing pilot program, which links certain drug prices in Medicaid to what other countries pay. CMS said in a press release on Sept. 18 that 40 states and Puerto Rico have already signed agreements to participate. Remaining states have until Sept. 30 to execute their agreements.

The model would require the second-lowest price in a country basket for certain drugs in Medicaid. Unveiled in January, the program is slated to run through 2030.

Ultragenyx sets $3.95 million price for rare disease gene therapy

Reuters

Ultragenyx Pharmaceutical said on Thursday it has set a U.S. list price of $3.95 million for its newly approved gene therapy Fayuvi, launching one of the world's most expensive drugs as a one-time treatment for ​a rare, fatal childhood disease.

The U.S. Food and Drug Administration approved Fayuvi for pediatric ​patients with Sanfilippo syndrome Type A, an inherited condition that progressively damages the ⁠brain and nervous system.

Proposing a Grand Bargain for More Affordable Employer-Sponsored Insurance

JAMA

Researchers from Harvard examined US health insurance costs. They recommended restructuring the American approach to insurance:

“We offer a new proposal for eliminating the tax exclusion for ESI [employer sponsored insurance], paired with the creation of a national reinsurance program for employer coverage that has the potential to improve health insurance affordability and distribute costs more fairly. Understanding current policy challenges in ESI can illuminate the potential advantages of this approach for employer coverage.”

Arkansas pharmacies sue Express Scripts over alleged underpayments

Fierce Healthcare

Twelve independent pharmacies in Arkansas are suing Express Scripts alleging the pharmacy benefit manager repeatedly underpaid them on tens of thousands of drug prescriptions, in violation of state law.

OTHER HEADLINES

• CNBC: Eli Lilly CEO says 700,000 new seniors have started GLP-1s after Medicare coverage, and 70% are on Lilly drugs
• NBC News: Trump administration cuts ACA coverage for 750,000 people it says were ‘fraudulently’ enrolled
• JAMA: Out-of-Pocket Costs and Adherence to Semaglutide for Obesity Among Commercially Insured Adults
• Fierce Healthcare: Florida AG sues PBMs, pharmas over rise in insulin prices
• Peterson-KFF Health System Tracker: How TrumpRx brand-name drug prices compare to other countries
• KFF Health News: The Drugs and Devices Have Been on the Market for Years. But FDA-Ordered Studies Still Aren’t Done.
• The New York Times: GLP-1 Prescriptions for People With No Medical Need Are Climbing
• KFF Health News: Insurance Coverage Lags as Cancer Science, Treatment Move Forward

Key Upcoming Dates

• 10/1: Parkinson’s disease — Public meeting (Register here)
• 10/1: Hypertension — Evidence Report
• 10/15: Friedrich's Ataxia — Draft Evidence Report
• 10/20: ICER, West Health Launch Price and Access — Final Report
• 10/29: Hypertension — Public meeting (Register here)

Learn more about ICER’s ongoing and recently completed reports:

• Friedreich’s Ataxia
• Huntington's disease
• Hypertension
• Parkinson's Disease

Email info@icer.org for more information.

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