Sometimes 3-year-old Davin Miller hides when the home health-care nurse arrives, toting bottles of a synthetic blood-clotting product.
"Treatment has come such a long way," says Kristine Miller (left), who prepares son Davin for an infus
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Davin Miller is an active 3-year-old with a blood disorder.
Evan Kerstetter doesn't let hemophilia slow him down.
Lorie Kerstetter and son Evan struggle with hemophilia daily.
Kristine Miller and son Davin struggle with hemophilia daily.
He knows it means he's going to get poked in the arm again.
But what he's just beginning to understand is that a simple stick could save his live.
Davin's twice-weekly infusions, which help his blood clot properly, are the main treatment for hemophilia, a blood disorder primarily affecting boys.
While Davin may have some apprehensions about his infusions, his parents, Kristine and Ryan, of Lititz, embrace the chance for him to lead a healthy life.
But they have other fears.
The Millers are hoping for passage of hemophilia standards of care legislation, now pending in the state House and Senate. The House bill was introduced in 2003, in opposition to insurance companies' proposed limits to care deemed necessary by hemophiliacs and their families.
If the bills fail to pass, Davin's treatment regimen could be threatened.
Right now, with the help of insurance, the Millers are fully covered for the weekly $2,000 cost for Davin's infusions. They don't have to travel to a hospital or one of the seven state hemophilia centers — the closest is in Hershey — to get the infusions done, except in an emergency.
Davin is one of 1,700 people in southeastern Pennsylvania and Delaware — more than 15,000 nationwide — with hemophilia. It is usually inherited and diagnosed shortly after birth.
People with hemophilia may bruise easily — the Millers once put kneepads on Davin for protection. External bleeding can be hard to stop, and internal bleeding, which is often difficult to detect, can lead to joint, tissue and organ damage, and even death.
Ann Rogers, executive director of the Delaware Valley Chapter of the National Hemophilia Foundation, knows firsthand what the Millers are facing.
She is also the mother of two hemophiliacs.
"We absolutely need standards of care," she says. "There are a particularly large percentage of people affected in our area."
Davin, like most diagnosed, has the most severe form of the illness.
"It was just such a relief to find something that works," says Kristine Miller, whose brother, now in his 30s, also has hemophilia. "Treatment has come such a long way since my brother was diagnosed.
"We don't want to go backwards."
Order for a disorder
Like the Millers, Lorie and Brian Kerstetter, of Lititz, want to ensure their son's current standard of life.
Evan, 10, has received infusions since he was a baby and now does his own at home three times a week. He plays soccer and baseball and is your average upbeat kid.
"It takes a team of people to raise a child with hemophilia — doctors, home health care, lab technicians, parents and support groups all working together," she says. "They help allow (Evan) to be a normal kid who happens to have hemophilia."
According to Katy Gresh, a press aide for the Pennsylvania Insurance Department, treatment for hemophilia and blood disorders is not mandated.
Standards of care vary in each state.
If passed, the state legislation would mandate health insurance companies to provide open-ended hemophilia benefits administered by any willing provider. That would include access to in-home care and pharmacies; state-recognized hemophilia programs (141 nationwide); blood products approved by the U.S. Food and Drug Administration; and medical screenings for bleeding disorders for women before certain surgeries.
A sticking point for those affected by hemophilia is a proposed preferred drug list as a cost-cutting measure.
"There is no 'generic' for hemophilia," Lorie Kerstetter says.
Hemophiliacs, she says, require very individualized blood treatments.
Also contested is the insurance company recommendation to use cheaper plasma blood products instead of the safer synthetic blood "factor."
From the late '70s to the mid-'80s, about half of all people with hemophilia became infected with HIV through plasma blood products, the foundation's Web site reports. Rogers' son was one of those who contracted HIV through an infusion. Currently, 10 to 15 percent of people with hemophilia are infected with HIV.
"Insurance companies want to save money like they can for other diseases," Kerstetter says. "It just doesn't work for hemophilia."
Behind the act
Meanwhile, Pennsylvania parents like the Millers and Kerstetters watch and wait, and support each other.
They have backing from the Medical and Scientific Advisory Council of the National Hemophilia Foundation, which sets treatment standards for hemophilia programs nationwide.
Pennsylvanians also have the support of Rep. Larry Curry and Sen. Sean Logan, sponsors of the legislation (House Bill No. 1105, Senate Bill No. 1030). Both bills are under review by the House and Senate committees and will be reintroduced at the start of the 2009-2010 legislative sessions.
"Testimony from these parents is very compelling," says Rep. Anthony DeLuca, D-Allegheny. "We need to think long-term about the ramifications of this legislation and think in the long-term — not just about short-term cost-cutting."
"We now have control of hemophilia," Kerstetter says. "It does not control us. But if the insurance companies take our options away now, hemophilia will control our quality of life later."
FOR YOUR INFORMATION
CONTACT: Ann E. Rogers, executive director, National Hemophilia Foundation, Delaware Valley Chapter, 222 S. Easton Road, Suite 122, Glenside, PA 19038
CALL: (215) 885-6500
E-MAIL: annr@hemophiliasupport.orgWEB SITE: www.hemophiliasupport.org
CONTACT THE NEW ERA: sjurgelski@LNPnews.com or 291-8756
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