Crystal, a patient with a rare form of muscular dystrophy, explains that she moved back to the United States due to her declining health as the medical treatments she needed were not available in the Netherlands.
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Devina, a mother of a child with Cystic Fibrosis, explains her struggle to gain access to treatments that are not available in Canada, but are in the United States and elsewhere.
Gerry discusses his experience living with primary biliary cholangitis (PBC) and the challenges of managing the condition in Ireland. He explains the frustration of knowing that newer therapies are available in countries like the United States, while patients in Ireland face limited access.
Gerry, who lives with primary biliary cholangitis (PBC), discusses his experience managing the condition and the difficulties he faces in obtaining newer therapies available in countries such as the United States but not in Ireland. Color of Gastrointestinal Illnesses (COGI) sent a letter to the Florida House and Senate expressing concerns about a pair of bills that would import discriminatory value assessment metrics.
The SPEAK Foundation sent a letter to the Florida House and Senate expressing concerns about a pair of bills that would import discriminatory value assessment metrics.
The Partnership to Improve Patient Care (PIPC) has issued the following statement in response to the Trump administration's consideration of "Most Favored Nations" policy in the U.S.
In this week's edition...
-- Data Mine Blog Analyzes a New Study from OHE on International Reference to QALYs. See details below. — Reps. Cammack and Hern Introduce QALY Ban Bill. See details below. -- Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below. -- COGI Reiterates Process Concerns for Maryland PDAB, Highlights NAACP Resolution. Click here to view the letter. -- Webinar Series on Newborn Screening: A Vision for Sustaining and Advancing Excellence. Click here to learn more. — PIPC Leads Comment Letter on Third Cycle of Medicare Drug Price Negotiation Program. See details below. — National Minority Quality Forum Issue Brief Details MFN Consequences. Click here to read the issue brief. — Report: Foreign Countries Rely on Flawed and Outdated HTA or Value Assessment Methods. Click here to read the report. — Update on the Texas v. Kennedy Lawsuit. See details below. — CMS References ICER and NICE in Explanations for Medicare Drug Price Negotiation Program. See details below. — Learn More About Alternative Measures for Value Assessment. Click here to learn more. — Emerging Threats in States for Use of Discriminatory Metrics. See details below. — What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below. — ICER's QALY-Based Study Topics. See details below. — Upcoming Events and Webinars. See details below. — AHRQ Effective Program Updates. See details below. The Color of Gastrointestinal Illnesses (COGI) recently penned a letter to Maryland Prescription Drug Affordability Board (PDAB) Director Andrew York that outlines concerns with the Board’s ongoing cost review activities.
By Siri Vaeth, MSW
My daughter, Tess, lives with cystic fibrosis (CF). She is twenty-five years old. Not too long ago that would have been unimaginable for a CF patient. I’m so grateful for the medical advances that allow my child to have a full life. |
