If you have hemophilia, multiple sclerosis or any number of other hard-to-treat diseases, the cost of your medications alone could reach into six figures, depending on your insurance coverage.

鈥淚t鈥檚 roughly $15,000 a month, and from that I鈥檓 lucky to have good insurance so we have good co-pay structure, co-insurance,” said Nick Vizzoca, whose 13-year-old son has hemophilia.

The Pittsburgh resident said he is worried his son鈥檚 medication could be placed into a specialty tier and the co-pay could sky rocket.

鈥淏ut with this proposed new tier, I think the fear is that, if there isn鈥檛 an out-of-pocket max, those could go through the roof,” Vizzoca said. “And I think that鈥檚 what鈥檚 really scaring us.鈥

The Pennsylvania Legislative Budget and Finance Committee is studying specialty tier prescription drug plans and their impact on patients and the insurance industry. This comes after the Senate Public Health and Welfare Committee passed a resolution calling for a report on the plans in October.

Currently, Medicare Part D requires plans to list the drugs covered by the plan and at what cost-sharing level. Many plans place drugs into different 鈥渢iers鈥 with medications in each tier having a different cost. For example, tier-one drugs are generic and tier-two drugs are brand name.

According to the Centers for Medicare and Medicaid Services, the specialty tier has the 鈥渉ighest co-payment or coinsurance鈥 and is for unique, high-cost drugs. In most plans, the other tiers have a standard co-payment, but patients who use specialty tier drugs pay 25 percent or more of the cost.

The Senate resolution says the number of those drugs is expected to grow by more than 25 percent a year.

Also, in other tiers, patients may ask for an exemption and pay a lower cost if they can establish that a non-preferred drug is medically necessary and more effective. But they cannot ask for an exception for a drug in the plan鈥檚 specialty tier.

In addition to Medicare, many private insurance companies also have plans with a specialty tier.

Ann Rogers, executive director of the Delaware Valley Chapter of the National Hemophilia Foundation, said drugs for hemophilia can cost $30-40,000 monthly for an adult.

She said Pennsylvania needs to do more to regulate co-insurance costs.

鈥淚 mean, if they started doing this in surgeries, could you imagine?” Rogers said. “You need a heart transplant. Well now you got to cost share. You鈥檙e going to pay 25 percent of the actual cost of the surgery. It鈥檚 unbelievable that anyone could think this could be helpful to people.鈥

The Pennsylvania Association of Health Underwriters did not respond to requests for comment before this story was published.

Rogers helped to push Delaware pass a law capping how much patients have to pay. Starting in January, an insurance company cannot make a patient pay more than $150 for a 30-day supply of specialty medication.

And Delaware isn鈥檛 the only state taking action. In 2012 Maine passed a $3,500 a year cap on medications.

The Affordable Care Act also imposed limits into the healthcare marketplaces. According to the Department of Health and Human Services, in 2014, non-grandfathered plans will have a cap of $6,350 a year for individuals and $12,700 for families. Currently, there is no cap in Pennsylvania.

People on the ACA plans will also always be able to request an exemption, unlike Medicare, and insurance companies will no longer be able to stop providing benefits once a patient hits a lifetime cap.

Nick Vizzoca said his son鈥檚 medication will cost more as he grows though because the amount taken is based on weight.

鈥淚t鈥檚 not treatable like high blood pressure. I can鈥檛 tell my son to go out an exercise and your disorder will get better,鈥 Vizzola said. 鈥淭hese folks are on maintenance prescription drugs for the rest of their lives. And I almost feel like they鈥檙e being penalized. It鈥檚 just, it鈥檚 frustrating.鈥

A 2009 study conducted by staff from NORC, a social science research center at the University of Chicago, and Georgetown University for the Medicare Payment Advisory Commission found that, as of 2008, 76 percent of Medicare Prescription Drug Plans and 90 percent of Medicare Advantage Plans were using specialty tiers.

The study also found that 鈥渂rand-only drugs are much more likely to be placed on specialty tiers, compared to those with generic alternatives.鈥

State Sen. Bob Mensch (R-Montgomery), the resolution鈥檚 prime sponsor, said studying the plans will give a better idea of what might need to be done legislatively.

鈥淚 think that it鈥檒l be a difficult sell but one that, if it鈥檚 appropriate, one that we can make,鈥 Mensch said. 鈥淭here鈥檚 never anything that鈥檚 always easy.鈥

The committee will report its findings no later than July 15, 2014.

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