WYMORE -- Lee Carr is an unwilling participant in a federal rule nightmare.
For about nine months, Carr has had increasing difficulty finding a pharmacy willing to supply his insulin on a long-term basis because he is a money-losing proposition for any business. And he's not the only one facing the bureaucratic problem.
Carr gets his insulin through Medicare Part B, a program that pays less for insulin than the drug costs the pharmacy, according to Joni Cover, executive vice president of the Nebraska Pharmacists Association.
And he’s worried that eventually no pharmacy in the region will be willing to lose money every month.
“It’s a huge issue. All these pharmacies have quit doing it. I understand. They have to make a profit to survive,” Carr said.
Carr was diagnosed with a kidney cancer when he was 1 year old, then had five years of chemotherapy and radiation. The surgery, radiation and chemotherapy saved his life, but Carr’s body no longer produces insulin.
About 17 years ago, Carr began using an insulin pump, which delivers the insulin continuously during the day and manages his diabetes much better than injecting it himself.
Carr, 41, who can no longer work full time because of his medical condition, uses the federal Medicare program.
And the insulin pump makes a big difference in Medicare’s bureaucratic world.
Carr puts two identical vials of insulin down on a table during an interview.
One belongs to a friend who controls his diabetes through self-injections. That vial was paid for through Medicare Part D — the prescription plan.
Medicare Part D paid the pharmacy about $150 for the vial. Carr’s friend has no problem finding pharmacies willing to provide him insulin.
Carr’s vial of insulin is paid for by Medicare Part B — as a medical supply. Medicare has not raised its payment for insulin under Part B since 2003, according to Cover.
Medicare paid the pharmacy about $75 for that vial, less than the pharmacy had to pay for the insulin, according to local pharmacists.
Carr generally uses abut three vials of insulin a month, more when there is stress — like trying to find next month’s insulin supply.
For the past nine months, Carr has found it increasingly difficult to find a long-term provider, a business willing to lose money every month supplying Carr’s three vials of insulin.
First Liberty Medical, a mail order firm Carr traditionally has used, stopped providing insulin for Medicare Part B.
Carr, who lives in Wymore, got his insulin one month from a local pharmacy, then from Walmart, then from another mail order company. He's had nine providers in the past year.
He bought a vial off Craigslist, but that is risky, he says. Who knows whether it’s really insulin?
Carr has spent hours on his cellphone looking for a pharmacy.
Walmart won’t do it. Shopko won't. CVS won’t do it, he said.
A Lincoln Walgreens filled Carr’s insulin last month and he’ll be driving to Lincoln next week to get his next month's supply.
It takes about $30 for gas for the trip to Lincoln from his home in Wymore, so Carr would prefer mail-order.
And he wonders how long Walgreens will be willing to provide insulin under Medicare Part B's low reimbursement.
Carr is not a shy man. "I’ve always been a fighter, which is probably why I lived this long," he said.
He’s talked with staff at the offices of U.S. Sens. Deb Fischer and Mike Johanns. They say Medicare is looking for willing pharmacies.
He said he’s talked to a very nice Medicaid caseworker for Nebraska's Health and Human Services, but her hands are tied. Medicaid doesn't step in when Medicare will pay for something.
Kathleen Taylor, the diabetes educator at Beatrice Community Hospital, has been scouting around for a willing pharmacy, particularly a mail order pharmacy. She tried to call Eli Lilly and Co., the insulin manufacturer, but got directed to a website. She's talked to a regional diabetes supply business.
“No one wants to take a loss,” she said.
A Medicare Advanced Resolution Team caseworker and the Regional Medicare Office in Kansas City are looked for a more permanent solution, Carr said.
He’s tried to talk to the director of Nebraska's HHS. The man at the top hasn’t called back, though he did have the state's Medicaid director talk to Carr.
He’s asked to speak to Gov. Dave Heineman. No luck.
He even tried to talk with federal Health and Human Services Secretary Kathleen Sebelius.
Carr has asked for answers. But they don’t make much sense.
A Medicare spokeswoman said the price is set in federal law — at 95 percent of the average, wholesale price in effect on Oct. 1, 2003. So it requires Congress to change it, she said in an email to the newspaper.
Julie Brookhart, a public affairs specialist in Kansas City, said there were "many suppliers that continue to supply insulin under Part B" and directed a reporter to the Medicare website, which listed four Lincoln suppliers.
However, none of those four stores supply insulin through Medicare Part B, based on telephone calls to all four.
Brookhart also gave a written explanation for the decision to provide the same insulin under two different programs.
Basically if the insulin is delivered by a pump, it is considered a medical supply and covered by Part B. If it is delivered by self-injections, it is considered a prescription and covered by Part D.
But Carr doesn’t understand why the bureaucracy or Congress don’t look at the practical issues and the hardships created by the very low reimbursement for insulin under Medicare Part B.
“Every time I go to fill it (insulin), it’s a crap-shoot,” said Carr.
Why has Congress not looked at this reimbursement rate? Why doesn't someone look at the practical issues?
Carr has been hospitalized more than 10 times in the past six months because he had no insulin.
Carr can’t figure out why Medicare or Medicaid can’t resolve the problem. It is far cheaper to help pay for insulin than to cover the costs of a hospital visit, he points out.
His doctor, Adam Brank, has the same question.
Brank said he has at least one other patient with a similar problem. She has borrowed supplies from a friend, he said.
"It is a real problem. And the tragic part of this is (Carr) is just super compliant, and this is forcing him to go to the emergency room."
Not everyone Carr has called in the past few months has been helpful.
He said he was told by one Medicare bureaucrat, “You have an agenda.”
“Yes,” he replied. “To get insulin.”