W USA Pacjenci z mukowiscydozą czekają na dostęp do nowych leków a w Polsce?

W USA Pacjenci z mukowiscydozą czekają na dostęp do nowych leków a w Polsce?
17 listopada 07:22 2015 Print This Article

New Texas law gives budget board Medicaid decisionstest

By Marilyn Moritz – Reporter



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SAN ANTONIO – Hunter Taylor straps on his vest and and puts the nebulizer to his mouth.  The machine begins to shake his body and he begins to cough.

„It breaks up all the mucus so I can cough,” he said.

Taylor, 19, has cystic fibrosis, a genetic condition that  attacks the lungs and digestive organs.

His lengthy menu of treatments, enzymes, vitamins and prescription drugs now includes a new pink pill called Orkambi. His mother, Stacy Taylor, calls it an answer to 19 years of prayers.

„It’s been a miracle for our family,” she said.

The FDA approved Vertex Pharmaceuticals’ Orkambi in July for treating people 12 and older who have the most common gene mutation and form of cystic fibrosis.  More than 40 percent of the testnation’s 30,000 cystic fibrosis patients could be candidates for the drug.

Taylor began taking it in August.

„He has gained 27 pounds, (he) can run,”  Stacy Taylor said. „There’s virtually no coughing. (He’s) just a different person.”

Taylor’s private insurance, for now, pays for his Orkambi .   If not, he would not be able to afford it.  It costs more than $20,000  per month.

Prescription drugs with exorbitant price tags are stressing state budgets and their Medicaid programs.

As a result, Texans on Medicaid are still awaiting access to Orkambi nearly four months after it hit the market.

To rein in costs, Texas legislators passed a law this year that puts the decision of whether to cover costly new medications in the hands of the Legislative Budget Board.

„I can tell you, unequivocally, having the Legislative Budget Board decide these things is absolutely the wrong thing to do,” said John Davidson of the nonprofit and nonpartisan Texas Public Policy Foundation Center for Healthcare.

Because there is a finite amount of money in the program and a finite number of people whose health care can be funded, Davidson said priorities need to be set.

„I would argue that cystic fibrosis and the new drugs that come to the market that treat it should be a priority,” he said. „The funding and payment for those drugs should not be a decision we kick over to the Legislative Budget Board.”

Davidson agrees that Medicaid is on an unsustainable path and that costs need to be reined in, but said there are no good ways to do that without changing the structure of how Medicaid is funded.

Hannah Clark, a 25-year-old St. Mary’s University law student, hopes the state approves Medicaid coverage of Orkambi soon.

„With cystic fibrosis, you kind of wait for the moment when your health plummets, so that inhibits you from planning for the future long term,” she said. „This drug kind of gives people with CF the ability to say, ‚Hey, this could be my future. Now, I can plan 20 years.'”

Clark is fortunate she is relatively healthy. Taking her regimen of medications and treatments has always been a part of her life.test

She has access to Orkambi through her parents’ private insurance. However, that will end when she turns 26.

After that, she’ll shop for private insurance that covers it at a cost she can afford.

Many cystic fibrosis patients rely on Medicaid because it can be difficult to to stay healthy enough to hold down  a full-time job.

Lengthy hospital stays are part of life, and those costs add up.

„One hospitalization costs the same as one year of Orkambi, because they are in for two weeks or longer,” Stacy Taylor said.

For that reason, Taylor says it would be cost-effective for the state in the long run.

„I know there’s lots of families out there that are fighting for this medication and need it,” she said. „There should never be a price tag on their health.”

Vertex Pharmaceuticals does have programs that offer financial assistance for the underinsured and uninsured.





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