Business is personal for Dianne Martz, president and chief executive officer of Nashville, Tenn.-based Hemophilia Health Services.
She founded the private, for-profit company in 1990 after years of searching for healthcare options for her son, Kyle Callahan, who was diagnosed with hemophilia in 1966 at the age of 3 months.
Before her son's diagnosis, Martz said she had never even heard the word hemophilia. When she sought information, she ran into doctors who told her to settle for a life of shuttling her son back and forth to the emergency room.
But she did not, and today the former sales representative for a telecommunications firm is head of a multimillion-dollar healthcare company that bills itself as the only one dedicated to patients with hemophilia.
Hemophilia Health targets its pharmaceutical, disease management and home-care services to the 20,000 people in the United States who have the lifelong blood disorder, which is caused by the absence or inactivity of essential blood-clotting proteins. The disease affects about one in every 4,400 births, most of them male.
The company has 60 employees and reaches 40 states. It expects to post annual revenues of $32 million in 1996. For 1995, it had net income of $2.7 million on revenues of $27 million.
Hemophilia Health and other home-care and disease management firms have given patients more options, said Jill Friedman, a spokeswoman for the National Hemophilia Foundation in New York.
Friedman explained that patients used to have to travel to a hospital or one of 140 federally funded treatment centers an average of twice a week to receive infusions of the necessary blood-clotting proteins. Now, she said, they can have supplies and medications delivered to their homes where they can self-infuse the proteins. The companies also provide access to visiting home nurses and counselors who can provide patients with a support network and monitor their conditions. "They are an important group in the hemophilia community," Friedman said.
Martz credits Hemophilia Health's success to her personal insights and those of Callahan, who is vice president of operations. "Because we live with hemophilia, we know what patients need to live healthy and normal lives," she said.
From early frustrations, Martz said she learned that "the more you can feel in control, the better life is for you." The lesson hit home hardest when Martz discovered that HIV was spreading through the hemophilia community. During the 1980s, about half the hemophilia population contracted HIV through contaminated blood products, including Callahan, who was diagnosed with HIV in 1986.
Martz had been warned of the threat through a counselor at a summer camp for children with hemophilia. "The doctors hadn't told us," she said. "I needed to get into the industry to learn what was going on. The people I trusted weren't telling me what I needed to know."
So Martz took a job with a California-based company that delivered clotting factor to patients at home. In two years, she expanded the business across 20 states. She quit when the company was acquired in the late 1980s by a drug manufacturer that required patients to use only its products. "There was no way I was going to work for a company without choices," she said. "I knew that a lack of choices could be deadly."
With investment help from the owner of a barbecue restaurant and from a local bank, Martz then founded Hemophilia Health, which emphasizes preventive and home care and seeks to fill the information gap by offering a resource library and publishing several publications.
Besides the perspectives of its executives, Hemophilia Health also trades on the cost efficiencies of home care.
Hemophilia care can cost $60,000 to $100,000 per patient each year, according to the foundation. This amount can increase by $10,000 to $50,000 a year if the hemophilia patient also is living with HIV.
Callahan said the company can help reduce costs by focusing on prevention. He said if the company can prevent one patient from going to the emergency room, it can save hundreds of dollars. The company's preventive services, he said, include preparing patients for surgery, monitoring their condition through regular phone calls or home visits, making sure certain medications do not have adverse interactions, and offering physical therapy services for those recovering from an operation.
Callahan said a priority for the company is securing managed-care contracts by emphasizing this cost-saving potential.
Hemophilia Health currently contracts with several Blue Cross and Blue Shield plans and with TennCare, the state's Medicaid managed-care program. It is in negotiations with several other managed-care organizations, according to Gloria Richardson-Gray, the company's director of managed care.
Friedman noted that most hemophilia patients pay for their services through private insurance or Medicaid. As yet, she said, only a small percentage of hemophilia patients have joined a managed-care plan. HMOs, she explained, generally do not have a strong expertise in hemophilia case management and often do not contract with the special hemophilia treatment centers.
But Hemophilia Health is betting that managed-care organizations are looking for ways to outsource the management of diseases like hemophilia that affect a small number of enrollees but a large number of dollars. "They're ready to focus on the more rare but costly situations," Richardson-Gray said. "We're in a position to have more leverage in the industry."