Last week we shared the story, published in the Concord Monitor, of Rusty Lovell, the late husband of NHTI employee Deb Lovell, and the bone marrow donation that saved his life. While that story itself was deep and complicated, there was really much more to it.
While the story talked about the man, Rusty, and the bond formed with his bone marrow donor, it didn’t mention the fight the family went through. How beyond just fighting leukemia, Rusty and Deb, who had three grown children and two grandchildren, had to battle with insurance companies, too.
While the couple always had coverage from the state, getting the medicine doctors said he needed and treatment from the best hospital wasn’t easy to come by. Still, Deb was appreciative for the coverage they had.
“I am so grateful for the coverage that we had at the time that Rusty was sick because it didn’t cost us that much out of pocket,” Deb said.
And she said the treatment he received was second to none.
“He had world class care,” she said. “It was a comfort at the time and is now that he’s gone that I know there was not any place that could have done it better. I have no regrets over any care that he got.”
But Rusty, who fought hard for eight years and beat cancer, got some of the most critical care because of Deb’s tenacity.
“I’m not typically the kind of person that is really outspoken, but I found on numerous occasions when I had to bump heads with healthcare to get what he needed, I had to put on my pitbull suit,” Deb said. “Some of the stuff is so ridiculous and I was fighting for his life. I think a lot of people become something else when they’re fighting for something that’s that important.”
The first time that pitbull suit came out came when Rusty was first diagnosed. The medication his doctor said he needed was new, and would treat his leukemia without any side effects, but the insurance provider rejected the claim. As they went through their first, second and third appeals, and with the fourth and final appeal looming, Rusty’s white blood cell count climbed. At that point, Deb took matters into her own hands.
Out of pure desperation, having worked in the pharmacy field previously, she knew that some companies had programs for families to get medication they needed. She found a phone number for the drug maker, Novartis, and called.
“I got put on hold for an hour. Finally I got a woman and I explained what was going on. She said let me put you on hold for just a minute,” Deb said. “She really did come back after a minute and she said they would provide the drug for us while we were going through our fourth appeal, and I was ecstatic.”
Some more legwork by Rusty’s doctor ensured he would have the medication even beyond the fourth appeal, as long as it was necessary. The fourth appeal was eventually approved and Rusty was improving on the medication. He looked fine, and felt fine enough that he went back to work full-time
Deb said Rusty was on that first medication for several years before he became resistant; but the drug makers were usually one step ahead. Each time Rusty became resistant and switched medications, the window of effectiveness became a bit shorter. When the third drug stopped working, his health declined rapidly.
“Things turned around quickly. He did a complete 180 in just a matter of days and he became resistant to the third one. We almost lost him then. That was in January of 2008. It was decided then that he needed to have a bone marrow transplant,” she said.
Without any familial matches or any in the U.S., they looked to the international registries. Sure enough, a perfect match was found in Germany, with a young man by the name of Christian Romeis. The transplant was scheduled for April, but no sooner had they scheduled than their insurance company told them the procedure had to be done at another facility. Rusty had been receiving his care at Tufts Medical Center in Boston since he was initially diagnosed with chronic myelogenous leukemia, and they weren’t leaving.
“We were like, ‘no way,’” Deb recalled. “Tufts has the most incredible bone marrow transplant unit and our oncologist there was phenomenal. But they said we’ll be facing at least a minimum of $100,000 out of pocket.”
At her wits’ end, a friend suggested she call the State Employees’ Association, where she got in touch with Linda Huard, a worker at NH Employment Security, who was on loan to the SEA to work on health care issues. With no time to waste as time was ticking on the donor hold, Linda got to work.
“Within five days, we had it signed, sealed delivered that we could stay at Tufts,” Deb said. “The insurance company was going to pay for everything. I cannot even begin to tell you how relieved we were. We were scared about the transplant anyway, and there was just no way we could switch hospitals.”
Linda Huard agreed.
“Let’s face it, he was fighting for his life,” she said. “To get all these balls in motion and to keep them in motion without him risking losing his coverage or losing the donor was very concerning to the family. So they called me and I got on the horn and called everybody and pushed really, really hard. And we were able to turn things around in five days.”
Right about there is where the story reconnects with the Monitor’s report. There were other setbacks along the way, but the bone marrow transplant was successful and Rusty was cancer free. He and the family expected he’d be around for a long time. Unfortunately, several infections hit him at the same time and he lived just two and a half years after the transplant. He had enough time, though, to connect with a young grandson, who was an infant at the time of the transplant.
“Where we really see the huge impact of two and a half years is with Jackson, because he has excellent memories, wonderful memories of grandpa, even though he was just over 3 when (Rusty) died,” Deb said. “But he remembers things that you would never imagine. To me that’s one of the most memorable impacts of the two and a half years.”
“He was a super dad, and he was a super husband,” she said. “And he absolutely loved being a grandpa.”
“He never complained, he never said ‘why me,’ he was just glad to still be alive and leukemia free,” Deb said, noting how grateful he was to his donor. “One of his biggest dreams was to thank him in person. That didn’t happen.”
The whole situation has left Deb more critical of the health care system.
“I don’t think people who are going through that stuff should have to go up against obstacles when they have healthcare coverage,” she said, and suggested looking at the universal healthcare models of France and Germany.
“I’m not an expert on medical care, I only know what we’ve been through, but no family should have to go through that,” Deb said.