Rare Disease Legislative Advocates



[DATE]The Honorable ______________________________ House Office Building Washington, DC ______Dear Cong_____________________,Thank you for your leadership on patient care issues. The undersigned organizations write you today to ask for your support and assistance advancing meaningful legislation to improve the lives of individuals and families impacted by pulmonary hypertension, the bipartisan Pulmonary Hypertension Research and Diagnosis Act (H.R. 3520). Pulmonary hypertension or PH is a serious, disabling, and often fatal progressive condition where the blood pressure in the lungs rises to dangerously high levels, ultimately resulting in right heart failure. PH can be idiopathic or occur as a result of scleroderma, HIV/AIDS, hepatitis, or other medical conditions. While PH can strike anyone at any age (including children), it disproportionately impacts women during their child-bearing years. Investment in medical research and sustained scientific progress in this area has led to nearly a dozen Food and Drug Administration-approved therapies for PH. When individuals are diagnosed with PH quickly they can begin appropriate therapy and their overall prognosis and life-expectancy improves significantly. However, it currently takes an average of two and a half years to receive a diagnosis and three quarters of patients have late-stage PH when they are finally diagnosed. Without treatment, the?median survival rate of patients with PH is approximately 2.8 years. Patients with late-stage PH cannot benefit from available therapies and often face dramatic and costly medical interventions, most notably heart-lung transplantation. H.R. 3520 would convene various representatives of the public health services together with the PH community to generate recommendations for narrowing the diagnosis window. Similar inter-agency efforts have benefited other patient communities, such as the one established by the Autism CARES Act in the 113th Congress, and this narrow effort should create positive gains for PH patients across the country. The recommendations generated by the committee would serve to improve health outcomes and extend life for PH patients, possibly lower PH-related healthcare expenditures, and reduce redundancy and duplication of efforts in this area.To cosponsor H.R. 3250, please contact Alyssa Palisi (Alyssa.Palisi@mail.) in the office of Congressman Kevin Brady or Adriane Casalotti (Adriane.Casalotti@mail.) in the office of Congresswoman Lois Capps.Thank you for your time and your consideration of our request.Sincerely, American Association for Respiratory CareAmerican Lung AssociationCaring Voice CoalitionCottage Pulmonary Hypertension CenterFoundation for Sickle Cell Disease ResearchGilead SciencesHepatitis Foundation InternationalKentuckiana Pulmonary AssociatesLung Transplant AssociationNontuburculosis Mycobacteria Info and Research, Inc.Patient Services IncorporatedPulmonary Hypertension AssociationScleroderma FoundationSleep Research SocietyUniversity of North CarolinaUniversity of WashingtonVirginia Commonwealth University Medical CenterWeill Cornell Medicine ................
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