Legislation Would Lower Out of Pocket Costs for Patients with Rare, Chronic Conditions

TOWSON, Md., Sept. 10, 2013 /PRNewswire/ -- The Immune Deficiency Foundation (IDF), one of more than 20 organizations as part of the Coalition for Accessible Treatments, supports the Patients' Access to Treatments Acts (H.R. 460). As more commercial health insurance policies shift a greater share of the costs of expensive treatments to patients, some patients with primary immunodeficiencies (PI), a group of rare diseases that occur in persons born with a malfunctioning immune system, cannot afford their lifesaving treatments. This bill would help these patients, and according to the results of a new study released today, H.R. 460 would have negligible impacts on health insurance premiums overall.

Insurers increasingly put immunoglobulin, a treatment that replaces the antibodies patients with PI do not naturally produce and helps them to avoid serious infection, and other expensive treatments into 'specialty drug tiers' that commonly require patients to pay as much as 33% of their actual cost, often costing patients thousands of dollars per month. These practices put medically necessary treatments out of reach for average Americans.

Judy Kozulak, a nurse who has PI, says, "If my infusions were moved to a specialty tier, as I have seen happen to my fellow patients, I would rapidly be financially overwhelmed because right now I am already financially challenged. I would be forced to choose between my mortgage and my infusions."

H.R. 460, introduced by Reps. David McKinley (R-WV) and Lois Capps (D-CA), limits cost-sharing requirements for medications in a specialty drug tier to the amount for non-preferred brand drug tiers, limiting the cost burden on patients needing expensive treatments.

The Coalition for Accessible Treatments commissioned Avalere Health, a healthcare advisory firm, to conduct a study analyzing the impact of H.R. 460 on commercial health insurance premiums. The study revealed that H.R. 460 would increase premium costs by only $3 per year, absent any other changes to the average benefit design, affecting a relatively small number of commercial health plans.

Specialty drug spending represents a small percent of overall health plan spending, which is why H.R. 460 would lead to a less than .01% increase in the average commercial insurance health plan. This finding is critically important, as the insurance industry often claims that high consumer out-of-pocket costs for these drugs is necessary to control overall health system costs.

Passage of this important legislation would mean that patients with primary immunodeficiencies could breathe a sigh of relief, knowing that their ability to pay for their treatments is no longer at risk.

"For patients living with PI, the specialty tier cost of their lifesaving immunoglobulin therapy could be as much as $2,000 per month, causing patients faced with this situation to go without care, risking serious illness and permanent impairment," states IDF President and Founder Marcia Boyle, "For this reason, the Immune Deficiency Foundation supports HR 460 which will ensure that our patients have access to the treatments they need on a lifelong basis."

The public can help pass this important legislation by asking their Members of Congress to support H.R. 460. Learn more at http://primaryimmune.org/idf-advocacy-center/private-insurance/

About Immune Deficiency Foundation

The Immune Deficiency Foundation (IDF), founded in 1980, is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.

To learn more about IDF, visit www.primaryimmune.org, or call 800.296.4433

SOURCE Immune Deficiency Foundation