BANGOR — Hector Valcarcel counts his blessings:
His fiancee, Debbie. The roof over his head. The culinary arts training that led to a satisfying career as a chef.
The list gets darker, and more complicated: the employer-provided health insurance that was in effect last year when he was diagnosed with incurable cancer. The charity of a local hospital that picked up the cost of his insurance premiums when he got too sick to keep his job. The MaineCare program that kicked in when the private coverage expired. The drug company that looks like it may, after all, provide for free the outlandishly expensive medication he needs now that he has lost MaineCare.
Varcacel’s experience reflects a fractured health care system with a tenuous safety net. He was playing by the rules. The 46-year-old says he never missed a day of work in his life until he was hospitalized in January 2009. He had graduated from community college, was employed full time and paying his share of premiums for a comprehensive health insurance plan.
But after he got sick, Valcarcel lost his private coverage and entered a looking-glass world of medical welfare, charity, happenstance and the kindness of strangers.
Through it all, the Bangor resident has remained optimistic. Grateful, even.
“What I’m most grateful for is that I can walk, that I’m not in a wheelchair or in bed,” he said in a recent interview. “And the incredible support of our family and friends.”
Despite having lost more than 5 inches of height and a tremendous amount of muscle mass over the past year and a half, and despite the grinding pain in his spine as the brittle vertebrae fracture and collapse, Valcarcel, 46, stays active in his community. He no longer can manage the demands of a regular schedule, but he volunteers his time in many ways — helping out at a local Meals for ME site, teaching safe cooking skills to disabled adults, and staffing The Barn, a social club for adults recovering from alcohol and substance abuse.
He also handles many household chores at the homey apartment he shares with his fiancee, Debbie Ritchie, who manages her own house-cleaning business. The couple’s apartment is provided to them in exchange for overseeing residential units for people recovering from substance abuse. Keeping busy, he says, helps keep his mind off the troubles in his life.
Despite his positive outlook, Valcarcel faces a difficult future. Multiple myeloma, the cancer that his doctors finally identified after months of misdiagnosis, causes plasma cells in the blood to multiply abnormally, cranking out large amounts of misshapen proteins. The immune system is undermined, the kidneys stop working, the blood clots with excess white cells, and bones become brittle and weak. The pain associated with the breakdown of bone is often severe and unrelenting.
There is no cure for this form of cancer, although some patients, Valcarcel among them, benefit temporarily from bone marrow transplants, chemotherapy and radiation.
The costs of treating any cancer, including multiple myeloma, can be huge. Valcarcel was covered by his employer’s health plan when he was first diagnosed. That insurance paid for an initial six-week hospitalization at Eastern Maine Medical Center, including three weeks in intensive care, after the pain he had been complaining about for months became intolerable and his kidneys shut down.
It paid for weeks of physical rehabilitation, chemotherapy to drive down the production of plasma cells, and “incredible amounts of pain medication,” Valcarcel said. His insurance also picked up the tab for a bone marrow treatment at Brigham and Women’s Hospital in Boston, which drove his cancer into remission for a few months, although it has since resurfaced.
In April of this year, after more than a year of keeping him on the payroll in order to maintain his insurance coverage, his employer finally had to let him go. Because of federal regulations, Valcarcel could keep his workplace health coverage for a few more months if he paid the full premiums himself, but he could not afford to because he was no longer working. Eastern Maine Medical Center came to the rescue, agreeing to pick up the premiums while he applied for Social Security disability.
“In March, I was declared disabled by the government and started receiving Social Security benefits,” Valcarcel said. “At the same time, they put me on MaineCare.” With MaineCare paying the medical bills, he was able to resume chemotherapy when his cancer became active again, stay in touch with his doctors in Boston and keep taking the oral medications that made day-to-day activities bearable.
But at the end of September, Valcarcel was abruptly informed that his MaineCare coverage was being terminated.
“They told me I was overqualified because I make too much money,” he recalled. “It was like getting the rug pulled out. I was devastated.” His can-do spirit crumpled, and he broke down crying on the bus on his way home to Debbie.
“That was a really bad day,” he said.
In order to be eligible for MaineCare, Valcarcel would have to make no more than $903 a month. His monthly Social Security earnings are $1,021.
“So, basically, I’ve worked too much throughout my life to get the help I need now,” he said with a rueful grimace.
Since that bad day, the state has said he can be re-enrolled in MaineCare if he racks up about $4,200 in medical expenses within the next six months. That won’t be a problem, he said, except he will have to go into debt to reach the spend-down.
“I wish I had that kind of money sitting in an account,” he said.
In the meantime, his doctors want him to continue treatment, including twice-monthly intravenous chemotherapy and near-daily doses of Revlimid, a pricey new drug that inhibits the proliferation of abnormal white cells in his blood.
Without MaineCare coverage, the Revlimid alone would cost about $8,000 a month. Last week, Valcarcel got the word that the manufacturer, Celgene Inc., will provide the drug for free for six months.
“Right away, we started saying our prayers and thanking God,” Ritchie said.
Now being hounded to pay overdue bills and student loans, Valcarcel intends to file for bankruptcy. It’s a situation he never wanted to be in, but he doesn’t have many options.
“It’s gotten so bad they’ve started calling my family,” he said. “At this point I don’t have much to lose.”
Valcarcel said he works at maintaining a positive outlook, despite his devastating diagnosis and the emotional and financial roller coaster of the past year and a half.
“I think I just have a lot of faith that God is going to see me through,” he said. “I try to do everything I can to focus on the solutions instead of on the obvious problems.”
His future promises to be full of medical complications and financial difficulties, but Hector Valcarcel is philosophic about it.
“This is just the way it’s going to be for the rest of my life, and if it helps keep me alive, then I am willing,” he said.
Ritchie, too, said her fiance’s health crisis has a silver lining.
“The physical and emotional pain he’s going through is hard enough without having to figure out the monetary part, too,” she said. “But even going through this rough time, we have a lot of blessings. He’s alive, he’s able to manage pretty well on his own. We have a nice home, and we have each other.”
To help Valcarcel and Ritchie with the expenses associated with his care, a spaghetti dinner and quilt raffle will be held from 4 to 7 p.m. Saturday, Nov. 13, at the Crossroads Apostolic Church in Hancock. Donations will be accepted at the door. Those unable to attend the supper but who would like to help may mail checks made out to Valcarcel Fundraiser to First Bancorp, P.O. Box 858, Northeast Harbor 04662. For more information, call the bank at 276-3888 or Ritchie’s business phone at 949-6929.