Rob
Day
Port Huron, Michigan
- Paroxysmal Nocturnal Hemoglobinuria (PNH)
- Diagnosed in 1988
- Biologic: Soliris
- Married with two daughters
Rob Day spent half his life waiting for a medicine to treat his rare condition.
Now that he has the medicine, he can’t afford to keep it.
In 1988, Rob Day was just a 19-year-old in a Pennsylvania art school when
he started to notice he was getting winded more and more easily. He tried
not to think about it, but people started to comment about how pale he
looked. A long series of tests finally revealed the truth -- Rob had Paroxysmal
Nocturnal Hemoglobinuria (PNH.)
An extremely rare disorder, PNH has devastating
effects. It causes the rapid destruction of red blood cells. As a result,
PNH patients are at great risk for blood clots and anemia. There is also
constant pain, and chronic exhaustion. For the next 20 years, Rob exhausted
all his medical options. Nothing worked. When he was in his early thirties,
he suffered a blood clot in his liver. That same year, he had surgery
for his appendix. “I went through hell,” Rob said of that time in
his life.
Through it all, Rob persevered. He got married and had two children. In
2007, his patience paid off. A new state-of-the-art drug called Soliris
was approved by the Food and Drug administration as the first treatment
for PNH. Rob has been on it ever since and he feels like a new man. He
has energy he hasn’t felt since he was a teenager.
But in just two years, it could all end.
Soliris is a biologic -- an extremely advanced medicine
that is exorbitantly expensive. It costs $389,000 a year and to stay healthy
Rob must take it for the rest of his life. In 2011, Rob will hit, however,
the cap limit on his insurance. At this point, he will have to make a
very tough decision. He can join his wife’s insurance plan -- but he will
have to pay more than 30 percent of the total cost of the medication annually.
An amount that few wealthy individuals could afford, let alone a graphics
artist. “We’re not sure what we will have to cut in order to pay the $800
a month, but we’ll have to cut something,” he said.
He is hopeful that he will receive coverage from the National Organization
of Rare Disorders (NORD), but he knows many patients like him are desperately
trying to get their limited resources. His only other option will probably be
to apply for disability and receive coverage from Medicaid.
For the sake of his wife, and his two young girls, Maddie, (age 8) and
Gabby (age 4), Rob is determined to find a way to make it work. “I’m doing
it for the kids,” he said.
Rob and other patients with PNH have a long physical and emotional struggle
in front of them, dealing with a terrible illness. A generic pathway that
could yield more affordable versions of their biologic medicine could
at least give them some peace of mind and help to ease their financial
burdens. “If I could buy a less expensive version, I would be all for
it,” Rob said. “I’m all for generic brands. I hope Congress makes the
right decision and votes against 12 years exclusivity. We need affordable
medicines in the hands of patients much more quickly than that.”