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. 

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