There are many agencies in the US government with policies or services that can impact the lives of people with ITP and other platelet disorders. The Centers for Disease Control and Prevention (CDC), a division of the Department of Health and Human Services (HHS) provides information and establishes programs to monitor diseases and help protect our health. Another division of HHS, the Food and Drug Administration (FDA), approves new treatments and monitors the safety of those that are on the market. The National Heart Lung and Blood Institute (NHLBI), a part of the National Institutes of Health (NIH), funds education and research on blood diseases. The National Institute of Environmental Health Sciences (NIEHS), another part of the NIH, examines how the environment influences disease.

PDSA has contact with all of these agencies to promote awareness, advocate for more research, promote the approval of treatments, and monitor aspects of the environment that may cause or worsen ITP.

Selected Activities:

Present at the NIH - Caroline Kruse, PDSA’s Executive Director, spoke at the annual Public Interest Organization meeting of NHLBI. 

Work with the CDC - PDSA staff attended the first ever conference on Blood Disorders in Public Health sponsored by the CDC.

Testify at FDA hearings - Joan Young, PDSA Founder, testified at the FDA hearings dealing with the approvals of the thrombopoietin mimetic treatments.

Communicate with the NIEHS - PDSA staff attended a meeting of the patient groups interested in environmental causes of disease. We also search publications from NIEHS to locate and communicate research findings impacting our group.

ITP is one of almost 100 different autoimmune diseases, conditions where the body attacks seemingly healthy tissue. About one in five people in the US have an autoimmune disease and it is in the top 10 leading causes of death in females younger than 64. Despite this huge public health issue, many policy makers do not fully understand the implications of this group of diseases. PDSA joins with other patient groups in the National Coalition of Autoimmune Patient Groups (NCAPG) and the American Association of Autoimmune Related Diseases to help bring attention and advocate for more research in this important, underserved population.

Selected Actions:

Sponsor congressional hearings - PDSA was one of the sponsors of the 2012 US Congressional briefing “The Multi-Generational Impact of Autoimmune Disease:  America’s Silent Health Crisis.”

Heighten global awareness - PDSA staff attended the Non-Governmental Organization Health Committee meeting of the United Nations to bring global awareness to the financial and personal burdens of autoimmune diseases. 

Blood safety is of vital importance to PDSA and other support groups since many people receive blood-derived products such as IVIg or platelets during the course of their treatment.

PDSA staff monitors emerging issues on the national and international level concerning the safety of the blood supply and advocates for policies in the interest of our constituents. Along with other members of the American Plasma Users Coalition (A-Plus), PDSA contributes to letters, articles, and meetings to help assure the safety of this vital resource.

Selected Actions:

Monitor blood donation policy - Along with A-Plus, PDSA continues to monitor the proposed changes to the blood donation policy to allow gay men to donate blood. PDSA staff attended the meeting of the Advisory Committee on Blood Safety and Availability of the Department of Health and Human Services and advocated for more research before proceeding.

Attend blood safety workshops - PDSA staff attended a workshop on the Quarantine Release Errors in Blood Establishments sponsored by the FDA Center for Biologics Evaluation and Research, America’s Blood Centers, and the Department of Health and Human Services. 

At PDSA we hear from many people who do not have health insurance or cannot afford treatments, very sad situations that PDSA is working to correct.

Improving healthcare access and controlling healthcare costs are very complex issues. For greater impact PDSA joins with the like-minded patient support organizations of the American Plasma Users Coalition (A-Plus). Together we work to understand the implications of new regulations and policy changes and advocate for affordable healthcare access for everyone.  

Selected Actions:

Staff provided input to the Affordable Care Act, reviewed drafts as the law progressed, and signed letters in support of particular sections. Below are documents outlining sections of the law that directly impact many people we serve.

A-Plus Insurance Toolkit - A comprehensive guide to understanding and navigating the Affordable Care Act, especially designed for people with bleeding disorders

Glossary – Definitions of terms used in health insurance contracts and in the discussion of healthcare reform

Healthcare Access by State - Important information prepared by The National Organization for Rare Diseases listing specific resources in each state. This can help everyone get the best care under the new law.

Coverage Tiers – Explanation of the requirement for insurance companies to offer four tiers of coverage with the same essential benefits beginning in 2014

Essential Benefits – A list of what insurance companies are required to cover

Health Insurance Exchanges – Information on these new state-administered organized insurance marketplaces for individuals and businesses

Subsidies to Buy Insurance – Details on the financial assistance available from the federal government to help individuals purchase insurance from the exchanges

Insurance Coverage Letter - Along with A-Plus and the National Organization for Rare Disorders, staff monitored changes in insurance coverage and signed a letter to Highmark, an insurance company, indicating our dissatisfaction with their recent policy change.

ITP is a rare disease, one of 7,000 different diseases each effecting fewer than 200,000 people in the US. Because many rare diseases have similar goals, PDSA partners with the National Organization for Rare Disorders (NORD) to have a stronger advocacy voice. Close to 25 million people in the US have a rare disease making this group a formidable force in bringing awareness to these conditions, advocating for additional research, and supporting policies that expedite treatment approvals.

Selected Actions:

Communicate with the FDA - PDSA staff and other rare disease support groups attended a NORD-sponsored meeting with the Commissioner of the Food and Drug Administration (FDA).

Work with the NIH - PDSA staff attends Rare Disease Day at the National Institutes of Health (NIH), learning more about the progress in understanding the causes of rare diseases and finding effective treatments.