Mensch Recognizes Rare Disease Day in Harrisburg

Harrisburg –  State Sen. Bob Mensch (R-24) joined colleagues, patients, physicians, and industry leaders to focus on the challenges and triumphs of living with rare diseases in the Commonwealth of Pennsylvania.

“In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans,” said Mensch. “There are approximately 6,800 such diseases, according to the National Institutes of Health (NIH). While each disease is rare, when considered together they affect nearly 30 million Americans or almost 1 in 10 people. There are certain challenges that all patients and families affected by rare diseases share.”

During Senator Mensch’s remarks, he referred to his previously introduced legislation, Senate Resolution 2013-70, which directed the Legislative Budget and Finance Committee to study the issue of specialty tier prescription drug pricing in Pennsylvania.  Drugs on specialty tiers are often used to treat chronic or life-threatening conditions such as hemophilia, multiple sclerosis, hepatitis, cancer, and certain rare conditions. They are often biologics, rather than traditional chemical drugs. Because such drugs are manufactured in living organisms with high sensitivity to change in the manufacturing process, exact replication is almost impossible, and they have no generic equivalents.

Certain specialty drugs may be covered under a beneficiary’s medical insurance benefit, or under a separate outpatient prescription drug benefit. According to Express Scripts’ drug trend report in 2010 and a Milliman analysis based on 2009 and 2010 claims data, about half of all specialty drug spending occurs under a health plan’s medical benefit and the other half under the outpatient prescription drug benefit.

Specialty drugs are also very costly. Often they require the beneficiary to pay a percentage of the drug’s cost (i.e., a coinsurance), rather than a fixed dollar amount (i.e., copayment) for the drug. Typical out-of-pocket costs for a specialty drug with 20 percent cost sharing is in the range of $1,500 to $3,000 per prescription, according to one major pharmacy benefit manager.

“Specialty tiers shift costs onto patients, which can reduce adherence to treatment,” said Mensch.  “This is why we need to consider ‘stop gap measures’ such as limiting out-of-pocket costs for life-sustaining drugs on specialty tiers such as Delaware and Maryland have done.

The overall impact may be limited, but some would be helped.”

In addition to discussing the specialty tier drug issue, Senator Mensch appreciated the opportunity to support attendees on advocating awareness for rare diseases.

More information about state issues is available at Senator Mensch’s website,, on Facebook, and Twitter


Sarah Stroman  (215) 541-2388