Ask people suffering from bleeding disorders such as hemophilia and von Willebrand disease in Wisconsin, and many people will tell you that David Linney has literally saved their lives.
In his 32 years of service as a financial counselor at Great Lakes Hemophilia Foundation (GLHF), Linney has helped more than 11,000 Wisconsin families and individuals access life-saving medical treatment and avert financial ruin.
Linney strives to ensure that his clients have the best insurance coverage possible with minimum out-of-pocket expenses by reviewing their personal situations and presenting them with options.
For a person with severe hemophilia, treatment costs can top $235,000 annually, meaning that those with bleeding disorders face enormous financial challenges. These people run the risk of reaching their lifetime insurance cap, thus ending their family health coverage.
Nationally, 20,000 people have hemophilia, with about 500 patients here in Wisconsin. Through the Milwaukee treatment center, there are about 4,000 people with hemophilia, bleeding disorders and thrombotic disorders.
Linney has developed a model of insurance counseling for chronic diseases that is recognized by the federal government. In his role with GLHF, Linney assesses people’s insurance coverage and their overall costs. He works to develop their insurance plan to maximize all available coverage, including health insurance and other payment resources to minimize out-of-pocket costs.
“Our insurance and payment system is so complex and overwhelming,” Linney says. “If you take a step back and look at this, it borders on absurdity. It can be daunting for someone with an expensive medical condition to understand and make the correct decisions.”
Therefore, Linney needs to know a lot about Medicaid, Medicare, commercial insurance, employer insurance, the Wisconsin chronic disease program, the children with special needs program, and also HIPPA and COBRA.
“You have to be able to understand the nuances of the different laws, administrative laws, so that they are in the best position to have the best insurance, and to provide coverage, long-term. We seek to maximize everything that is out there,” Linney says.
Linney also counsels people about their rights to employment and disclosure of their medical condition.
On the national level, Linney has been influential in the identification and pursuit of legislative issues such as the Genetic Information Nondiscrimination Act, which passed both houses of Congress this year. He played a leading role by authoring a white paper describing a standard of service for bleeding disorder patients that was accepted by the Medical and Scientific Advisory Council of the National Hemophilia Foundation.
The gratitude that comes back is in knowing that he has helped people with a medical condition and very high expenses, Linney says.
“No one ever plans on having a child with a chronic disease,” said Liz Fitzgerald, who has two children with Hemophilia A. “It’s not easy to ask for help, but he takes some of the stress away, and some of the shame out of having to ask for assistance. It’s nice to know you have someone like David Linney to throw you a lifeline.”
