A different kind of pharmacy supply company was founded in Mayfield in 2000. That company, Positudes, was started by and for hemophiliacs.
Hemophilia is a genetic bleeding disorder that prevents the blood from clotting normally, according to the National Hemophilia Foundation Web site. The main symptom is uncontrolled, often spontaneous bleeding. Internal bleeding into the joints can result in pain, swelling and, if left untreated, permanent damage.
Co-founder Lawrence Madeiros passed away due to complications from the disorder in 2001. He was infected in the 1980s with HIV and hepatitis through a tainted blood product. His widow, Carol Madeiros, carries on his vision with the other co-founder, pharmacist Vincent Fusaro.
The Leader-Herald/Richard Nilsen
Carol Madeiros of Positudes works on a mailout in her office in Mayfield Wednesday.
"Larry and Vinney met at a hemophilia conference," Carol Madeiros said. "Larry was a visionary and wanted the profits from the sale of blood factors for hemophiliacs to benefit the community."
Carol Madeiros said Positudes is the only non-profit pharmacy supply company in New York.
There are many inequities in blood factor supplies needed by hemophilia patients, Madeiros said. The supplies are so expensive that the $1 million lifetime cap limit of many health insurance companies is quickly reached.
Hemophilia results from a deficient protein known as a blood clotting factor. The two main forms are hemophilia A (factor VIII deficiency) and hemophilia B (factor IX deficiency).
Hemophilia A occurs in 1 in 5,000 live male births. Hemophilia B occurs in 1 in 10,000 live male births.
The worldwide incidence of hemophilia is estimated at more than 400,000 people. Approximately 70 percent of people around the world do not have access to treatment.
"Factors can cost $30,000 to $50,000 per month in some cases," Carol Madeiros said.
Because of the profits to be made, some major insurance companies have set up their own pharmacy supply companies. Madeiros said insurance companies require those insured through them to use only the pharmacy supply companies linked to the insurance companies.
Madeiros said her husband wanted profits from the sale of blood factor agents to help the hemophilia community and other worthwhile causes, so profits beyond administrative costs are donated.
"Larry thought someday a cure for hemophilia would be discovered," Madeiros said. "So he set the company up to supply other chronic disorders as well."
She said they offer counseling to hemophilia sufferers with special needs, including ways to have children without passing on hemophilia related complications.
"We collect and disseminate information regarding insurance issues, home infusion, treatment options, raising children with bleeding disorders, patient choice, HIV and hepatitis, and family planning and viral discordant couples," she said.
John DiGiorgio works in administrative coordination, advocacy and sales with the company, which he said grossed about $3.5 million last year.
"Prior to the 1980s, a lot of blood products were tainted," DiGiorgio said. "Then, as technology improved, that risk of HIV infection was greatly reduced."
DiGiorgio said between 18,000 and 20,000 people in the U.S. have hemophilia.
"They are primarily men and many died because of tainted blood products in those early days," he said from his office in Virginia. "My position could be located anywhere."
Fusaro, who works from Merrick, Nassau County said the business is able to supply large number and wide range of clients.
"We supply about 100 clients in one form or another," Fusaro said.
"Right now the industry is in turmoil," DiGiorgio said. "Organizations like ours offer specialized care to those with hemophilia - two-thirds of which are hereditary."
DiGiorgio said the other third of hemophiliacs occur spontaneously.
"We offer personal support to patients, which is a lot of what Carol [Madeiros] does," DiGiorgio said. "We are more than a just a supplier and hope to maintain a personal touch."
Madeiros and DiGiorgio both agreed the company has remained small by choice and will stay small.
Besides donating profits from their company back to the community, they help sponsor fundraisers such as golf tournaments in Florida and Virginia.
In Mayfield, the Adirondack Spintacular sponsors scholarships for youths with hemophilia going to college. The next Spintacular is scheduled for Aug. 23.
For more information on Positudes, call 1-866-767-4883 or 863-8998 or e-mail firstname.lastname@example.org.
Richard Nilsen is a general assignment reporter and can be reached at email@example.com.