The Plasma Protein Therapeutics Association released the following statement regarding passage of the H.R. 3590, the Patient Protection and Affordable Care Act:
"PPTA recognizes the historic achievement of President Obama and Congress in providing affordable, quality health care to millions of Americans.
As the organization that represents the manufacturers of complex, biological therapies that treat extremely rare diseases and disorders, we have participated in the discussion surrounding health care reform for more than a year and have worked with Members of Congress to inform them of the unique nature of the industry and of the importance of preserving access for the fragile patient population our members serve."
"There are a number of provisions in the health care reform legislation that represent positive steps for individuals with rare, chronic diseases. Consumer organizations representing users of plasma protein therapies did an outstanding job working with Members of Congress to eliminate lifetime limits on insurance benefits and to end the practice of denying coverage based on pre-existing conditions. These insurance reforms will help all Americans access and maintain the medical care they need."
"Throughout the health care reform debate, PPTA championed the inclusion of an Expert Advisory Panel for Rare Disease with respect to new provisions for Comparative Effectiveness Research and commends Congress' decision to keep this provision intact in the final bill. The Association particularly thanks Senators Max Baucus (D-Mont.) and Kent Conrad (D-N.D.) for their leadership in originally including this protection for rare disease patients in S. 1213, which PPTA strongly supported.
"As with any new piece of groundbreaking legislation, challenges remain. As health care reform moves toward the implementation phase of the process, PPTA looks forward to working with the Administration, Congress, and the states to ensure that any rules promulgated recognize that continued access to and innovation of plasma protein therapies are vital to the rare disease community. Working to protect the rare disease populations that rely upon lifesaving plasma protein therapies as part of their treatment plan is and will remain a priority for PPTA"