Hemophiliacs Seek Better Pharmaceutical Standards
By SAMANTHA LISS
Missouri News Horizon
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JEFFERSON CITY, Mo. — Henry Lohmann reminds his mother before she meets with state representatives that he is not seven years old, but seven-and-a-half. But Mary Fleming is more interested that lawmakers understand the danger her son faces.
She sees a lack of accountability among pharmacies serving those who, like her son, are threatened by hemophilia – a condition that can cause uncontrolled bleeding. And at least two state representatives – one from each side of the isle – share Fleming’s concern that specialty pharmacies could better serve their clients and take steps to avoid potentially life-threatening substitutions of prescriptions.
Rep. Robert Schaaf, R-St. Joseph, sponsored a bill in the current legislative session that would establish a higher standard of care for specialty pharmacies that supply prescriptions to people with bleeding disorders. Rep. Rebecca McClanahan, D-Kirksville, co-sponsored the effort.
Schaaf, who is a pediatrician in northwest Missouri, told a House committee considering the bill that a better baseline of service is necessary for those who agree to provide the service.
“If you’re going to do it, then you’re going to have to do it right,” Schaaf told the House insurance policy committee at a hearing for the bill on March 17.
House Bill 1525 would not affect all pharmacies within the state, only those that engage in dispensing blood-clotting medicine, primarily for people with hemophilia and other bleeding disorders.
“We’re not asking for access to more pharmacies, we just want the pharmacies that we do have access to – that are licensed to do this kind of business in Missouri and that treat bleeding-disorder patients – to do so at this recommend standard,” said Fleming, a legislative advocate for the Gateway Hemophilia Association in St. Louis.
These speciality pharmacies, such as mail-order operations, can change the brand of medicine to one that was not originally prescribed by the doctor, which can be life-threatening to a hemophiliac, she said. Medicine is sometimes sent with more than the prescribed amount, which sets patients on a faster track to reaching the maximum limit on their insurance policies, she added.
Most troublesome for parents like Fleming is when these pharmacies do not supply products quick enough for their children’s needs. Fleming cited a case where delays in filled prescriptions forced the mother of two kids with hemophilia to address pill shortages with trips to the emergency room.
The Missouri Board of Pharmacy, which enforces the state’s existing standards for the industry, does not have leverage to police these speciality pharmacies without the help of legislation.
“From the board’s perspective we really don’t regulate access to care,” said Kimberly Grinston, the pharmacy board’s executive director. “That’s really something that’s done on the legislative side. So to the extent that there is a shortage or a problem with distribution and supply, that’s not something that the board of pharmacy can address.”
It’s All About the Money
Money lies at the root of the problem, according to sources tied to the pharmaceutical industry.
“Many times they [speciality pharmacies] tend to want to dispense drugs that they get rebates from the manufacturer,” said Clark Bolcom executive vice president of PBA Health in Kansas City.
Typically local pharmacies do not dispense the medicine because of reimbursement issues, said Smith. Usually, employer-based health care receives incentives to work with the speciality pharmacies, as opposed to working with local pharmacies.
“The pharmacist would dispense it if they had the ability to get paid for it, but in the meantime the insurance companies are directing things towards their own pharmacies,” said Dale Smith, director of third party programs with PBA Health and a former pharmacist.
One way to stimulate better care is to create more competition says Bolcom. He suggested allowing local pharmacies to dispense the drug and be reimbursed. This move would provide the patients faster access to get the medicine, he said.
To create better care, this bill should be more broad and address the specialty pharmacy industry and not just bleeding disorders, Smith said.
Speciality pharmacies have licenses to dispense drugs in every state, but enacting a standard of care through legislation would allow the Missouri Board of Pharmacy to police the distributors in this state, he added.
The fate of the bill depends on the leadership of the Insurance Committee.
“It’s difficult to tell whether it will continue to move forward,” McClanahan said.
The committee chair, Rep. Steve Hobbs, R-Mexico, did not respond to reporter’s questions seeking clarification on his plans to vote on this issue.
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Posted by Missouri News Horizon on April 9, 2010. Filed under Government.
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