Fifty-four per cent of liver condition patient groups represent patient interests to regulators. Direct regulatory engagement, real-world evidence and price-review negotiations are most common (each 13%), while 38% seek to influence healthcare policy and legislation.
54% of respondents from Liver conditions ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each Liver conditions sub-type
35 patient groups across 4 sub-types
interactions
Yes, we engage with the Ministry of Health, the Pharmacie Populaire du Mali [People's Pharmacy of Mali], and the National Assembly.
Oui, auprès du ministère de la santé, pharmacie populaire du Mali, de l'assemblée nationale.
National liver patient group, Mali
interactions
The Community Liver Alliance's advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases.
The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS, participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies.
National liver patient group, USA
actions & advocacy
Every year, we submit budget requests for the following fiscal year to the national government and prefectural governments.
毎年、国や都道府県に対し次年度予算要望書を提出。
National liver patient group, Japan
actions & advocacy
We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients.
We work with FDA, Congress, and the White House on federal policies that affect liver patients.
International liver patient group, USA
The percentages below highlight how the 16 patient groups interact with regulators and advocate for patient interests. As respondents may be represented in more than one area, percentages may not total 100%.
interactions
5 mentions
2 mentions
1 mention
1 mention
1 mention
3 mentions
2 mentions
1 mention
2 mentions
2 mentions
1 mention
1 mention
actions & advocacy
6 mentions
6 mentions
2 mentions
2 mentions
1 mention
1 mention
GET THE REPORT
Our research covers 2,262 patient groups representing 100 countries and 45 therapy areas. The sample report shows you the depth of analysis for a single country or therapy area. To access any other reports, please get in touch.
Visit patient-view.com to gather more information or email: Alex Wyke, alexwyke@patient-view.com
