CROMWELL, CT (July 11, 2018) – For the first time in her life, Jennifer Beck is able to go to the beach and bask in the sun. She can turn the lights on in her house and sit in front of a computer for more than a brief period of time. But those experiences have come at great expense.
The member of Hilltop Covenant Church has erythropoietic protoporphyria (EP), a rare disorder that causes her skin to feel like it’s burning when it is exposed to light after just a few minutes. She likened the experienced to “someone pouring boiling oil over you or like you want to tear your skin off because you’re getting burned from the inside out.”
As a result, she has had to cover every inch of her skin to protect it from the sun. Her condition suddenly worsened in April 2017 when even indoor lighting inflicted the same agony. That meant that Beck’s family often lived in darkened rooms.
Since last August, however, she has been traveling to Switzerland every eight weeks to get a treatment that still is unavailable in the United States. Within days of her first treatment, she was able to go shopping outside with her son and dress like anyone else. It was a thrill to be able to wear flip-flops.
It is the small things that have meant the most to her. “I can drive without putting on gloves,” she said. An occupational therapist, she is now able to work full-time. And she spends every possible moment outside.
But the cost for the bimonthly treatments has been astronomical. Each dose costs $16,000. The family has had to take out large loans.
Her church has stepped in to help. Special offerings taken at Hilltop raised enough money to cover the entire cost of her treatment this past March. That is especially remarkable given that the average Sunday attendance is between 25 to 35 people. “They’re small but they’re mighty,” Beck says.
An individual paid for her May treatment. The day care connected with the church raised $6,000 to cover the treatment this month.
The church has traveled with her throughout her journey. When her condition worsened so that she couldn’t be exposed to any light, the congregation decided to worship with the lights off.
“It has been a surreal experience,” Beck said of the way the church has cared for her. “It’s overwhelming.”
Beck has always been focused on giving to others. She serves on the board for Ädelbrook Behavioral and Developmental Services (formerly the Children’s Home of Cromwell), which serves children and young adults with autism. She also has testified at the state legislature on bills concerning people with disabilities.
Beck says about 4,000 other sufferers in the United States don’t have access to the treatment. The medication, Scenesse, has not been approved by the Federal Drug Administration.
It has, however, made it through three rounds of trials, and the drug maker, Clinuvel Pharmaceuticals, applied last month for final approval. Beck is working with the American Porphyria Foundation to push for the FDA to give “priority review” to the application, which would shorten the time needed for approval from 10 to six months.
Insurance companies won’t pay for the treatment until approval is granted. Even then, companies may decide not to cover the cost.
Beck said she doesn’t know how long it will be before she is unable to afford the treatments without insurance. Until then, she is going to enjoy the sunlight and work to make the drug available so that others might experience the same privilege.