7.27.17

Adam Meyer was born in Johannesburg, South Africa. When Meyer was 18 months old, doctors discovered he had an enlarged liver, an enlarged spleen and an abnormal blood count.

Meyer’s doctors were at a loss – could it be cancer? Leukemia? Meyer was eventually diagnosed in 1981 with a rare disease, Gaucher’s disease.

Gaucher’s disease (pronounced go-SHAY) is genetic. It occurs when there’s a buildup of fatty substances in certain organs – especially in a patient’s liver and spleen. The enzyme responsible for breaking down the fatty substances is impaired. As a result, organs become enlarged, which affects their ability to function. In many cases, the fatty substances can also accrue in bone tissue, which weakens bones and impacts the blood’s ability to clot.

“I was really sick as a young kid,” remembers Meyer. “There was a lot of easy bruising, nosebleeds, weak bones. I spent a lot of time in and out of hospitals just dealing with the symptoms of Gaucher’s.”

Meyer continues: “When I was diagnosed in 1980, not only was there no cure for Gaucher’s, there wasn’t even treatment available. The doctor told my parents to enjoy the time they had with me and said that I wouldn’t live to see my sixth birthday.”

“Being sick from such an early age means I’ve always looked for answers. I have a deep appreciation for life,” says Meyer. “My experiences have led me to become a motivational speaker and a coach.”

When Meyer turned 9, his parents discovered a doctor in San Diego who specialized in rare genetic diseases.

“My parents moved across the world to save my life,” he explains. Meyer spent the next few years getting enzyme replacement injections three times a week. He continues to receive the same injections, but now only needs them once every three weeks.

“I obviously have to have an extensive insurance policy, and I’m fortunate enough to have insurance,” notes Meyer. “But insurance companies have the power to say that they will cover one type of medication, but not the other.”

Meyer relies on charitable premium assistance through both Patient Services Inc. (PSI) and Genzyme to help pay for his life-saving medication and treatment.

“The medication I need to stay alive costs more than $1 million a year – over $100,000 for each dose. PSI helps with my monthly insurance premium. Genzyme’s patient assistance program helps with out-of-pocket costs,” explains Meyer. For Meyer and his family, charitable premium assistance plays a critical role with treating Gaucher’s disease.

The Chronic Disease Coalition believes that charitable premium assistance should be available and legal for every chronic patient. Powerful insurance companies have long tried to outlaw charitable premium assistance, which is a critical lifeline so many families and patients. Join the Chronic Disease Coalition in our fight against discriminatory insurance policies.