Katherine Spacek has never had to use the patient assistance program offered by the manufacturer of the clotting factor used by her son Brock, an 8-year-old who has severe hemophilia A with an inhibitor. But just knowing the program is there and ready to provide free factor if the family experiences a lapse in insurance coverage gives the 44-year-old mother of four peace of mind.
That’s especially true now that her husband Brad’s employer is switching insurance carriers. The Stockton, California, family currently has coverage through a health maintenance organization (HMO) that has no lifetime cap on benefits. Katherine is hoping that will stay the same no matter what company is selected by the school district where her husband is a high school science teacher. In Brock’s early years, she explains, the family was in a preferred provider organization (PPO) with a cap on benefits. “Brock wasn’t even 2 years old, and we were staring our $2 million lifetime cap in the face,” remembers Katherine.
The stress of the insurance switch—and the country’s economic distress—makes Katherine even happier that she has signed up for the manufacturer’s patient assistance program. “Hopefully we’ll never have to use the program,” she says. “Having it there in the background is really comforting.”
Giving people with hemophilia and their families a sense of security is important. But the real purpose of manufacturers’ patient assistance programs—sometimes known as compassionate care programs—is to bridge gaps in insurance coverage temporarily and get people the clotting factor they need.
Understanding Patient Assistance
Experiencing a break in insurance coverage can happen to anyone, emphasizes Kim Bernstein, JD, director of Hemophilia Health Services’ Advocating for Chronic Conditions, Entitlements and Social Services (ACCESS) program.
Just about any major event in life can cause a loss of benefits, Bernstein says. She cites nearly a dozen reasons off the top of her head: “I quit my job. I lost my job. I’m getting a new job. I can’t work. I have medical bills I can’t pay. I’m getting married. I’m getting divorced. I’m having a child. I’m adopting a child. I’m moving.”
No matter what the situation, manufacturers’ patient assistance programs can help. There are two basic kinds of programs, Bernstein explains. One type provides emergency factor to customers who already use the manufacturer’s product and experience a gap in insurance coverage. Another type provides a limited amount of factor to people who have low incomes and no insurance coverage at all. Typically, Bernstein notes, you must be a legal resident in the US to be eligible for the latter.
Within the customer-oriented programs, there are also two variations. One kind simply provides factor to customers who experience a gap in insurance coverage. The other kind works like a loyalty program, says Penni Potter-Perez, JD, manager of ACCESS. In these programs, she explains, customers earn credits or coupons to redeem later if they have a break in insurance coverage.
The factor doesn’t come directly from the manufacturers. Instead, it comes from hemophilia treatment centers, homecare companies, pharmacies and the like. “Some companies give you a credit to use at any pharmacy,” says Beth Sufian, JD, director of the Baxter Bioscience-funded Bleeding Disorder Legal Information Hotline in Houston. “Some companies give you a voucher.”
Similar patient assistance programs are available from manufacturers of drugs for hepatitis C and HIV, adds Sufian. “Typically those companies don’t require that you be using the product beforehand,” she says.
A Participant’s Story
For Josh Gustin, 26, of Muncie, Indiana, the path to a patient assistance program began with something as simple as a lost letter. When he moved from his parents’ house to a home of his own last summer, much of his mail went astray—including a renewal notice from Medicaid.
“I didn’t know it was time to renew, so I lost coverage,” explains Gustin, an underwriter for a financing company. The result was loss of Medicaid coverage for the clotting factor he needs to treat his type 3 severe von Willebrand disease. Although his wife added him to the insurance policy she has from her job as a surgical technologist at a local hospital, the policy only covers basic medical needs—not factor.
Gustin turned to the Indiana Hemophilia and Thrombosis Center in Indianapolis for help. Counselors there set him up with a manufacturer’s patient assistance program, which provided factor during what turned out to be a particularly trying time. “I had to get some wisdom teeth removed and had some various bleeds outside of that,” says Gustin. “During the five months that I was on the program, I was actually using more factor than I had been in a while.”
Participating in the program also reduced Gustin’s stress. “It’s always reassuring knowing that you have somebody to help you out and give you what you need,” he says.
Since then, Gustin has exhausted the benefits available through the program. While he’s appealing for renewal of his Medicaid benefits, he has just one option left: the emergency room. “I’ve had to go to the emergency room in my hometown and wait four to six hours for them to give me some medicine,” he says.
Gustin doesn’t want others with bleeding disorders to have this experience. “Stay up on all your insurance information, so you don’t have to go through this in the first place,” he advises.
For Katherine, educating others about patient assistance programs is part of her mission in her part-time work as a family services representative for a homecare company serving families with bleeding disorders.
“I talk to people who still don’t know that these programs are out there,” she says. “I always ask them, ‘Do you know about this? Are you signed up? You may never need it, but you just never know.’”