Bill Erickson

Bone marrow recipient, Bill Erickson, is campaigning for a bill that would put a cap on the co-pay that individuals with rare diseases have to pay to stay alive, like the $3000 a month while he waited for his transplant. Here he tries to regain muscle tone while at ATI Physical Therapy in Bradley Wednesday morning. (11/12/14)

When Bill Erickson talks about "the cost of living," he isn't focused on grocery or utility bills, the cost of rent or anything so mundane. This 53-year-old Essex husband and father of two is talking about the skyrocketing cost of actually staying alive when facing rare health problems.

Since May 2012, Erickson has been engaged in an expensive battle with myelofibrosis, a bone marrow disorder — experienced by less than two of every 100,000 people. He was given 27 months to live, if he could not find a bone marrow donor.

"And while you wait to find a match, you need this medication. And that medication could cost you $3,000 a month," he said. "I have heard of people who have to decide if they're going to sell their house to pay for these prescriptions."

He hears those stories because he's joined the 'Cap the Co-Pay' campaign, established by the Illinois Coalition for Access to Affordable Medication. It's a partnership of advocates who fight the life-threatening but lesser known conditions.

With help from some Illinois lawmakers, the group has crafted proposed laws that would limit the co-payments on certain medication and remove the financial barriers to potentially life-saving drugs. The bills, SB3395 and HB6277, could come up for a vote as early as Nov. 19.

The turning point for Erickson, though, came in September, when a donor match was discovered in Germany. The 6-foot-2 truck driver had seen his weight drop to 166 pounds. He lost all of his muscle tone, but his life sentence was lifted.

"I couldn't believe the 27-month thing. I didn't feel that bad. I knew something was wrong, but ..."

Erickson's first symptoms were easy to explain away, he said. The night sweats were attributed to a little cold or maybe just the fact that he was sleeping in a different state every night on his long-distance trucking routes.

"My spleen was enlarged and pressing on my stomach so I always felt full. I didn't understand that, but I didn't think it was a big deal," he said. "I was tired all the time, but I was on the road. I didn't think that was a big deal either."

The symptoms didn't lead to a call to the doctor.

"It was just something my wife [Sue] said. She said it was a long time since I had a real physical, so I made an appointment. They did a blood test and that got things going. They called me back in for another test, and in a week I was seeing a blood specialist in Chicago."

Even with the transplant, Erickson's blood counts are not within a normal range. He hasn't been cleared to go back to work. But he has been approved for physical therapy that will get him ready to work again.

"They tell me it might be three to five years before my levels are right, but I'm one of the lucky ones," he said. "When you go to the registry to find a donor, they tell you it can be anywhere between three months and three years. Nobody gets in as fast as I did.

"All I can do now is to try to find that person [the donor in Germany] and try to thank him. But other folks are still waiting. And that's draining — emotionally and financially."