Merritt woman fears loss of at-home treament
A Merritt woman says she is devastated by the planned elimination of her at-home treatment of Primary Immunodeficiency Disease, a move she says could endanger the health of 450 British Columbians.
Rebekah Bowen has for the past year and a half suffered from the condition that weakens her immune system, requiring weekly doses of Hizentra, a drug that helps fight viruses the average person fends off every day.
Her PIDD went unnoticed until November 2010 when she woke up paralyzed from the waist down. She was able to walk three months later, after doctors diagnosed and treated her.
But now the at-home treatments she receives from a pilot program out of St. Paul’s Hospital in Vancouver aren’t receiving government backing, the program head said.
Bowen said she just learned that funds will run out in six months.
“If we have to get this treatment in the hospital every month, then that is putting us in serious risk of catching viruses,” she said, noting 100 of the 450 people who suffer from PIDD provincewide administer the Subcutaneous Immunoglobulin treatments at home and about 75 per cent of sufferers want the option.
Up until five months ago, Bowen visited the Nicola Valley Health Centre to receive monthly doses, a process she said left her weak immune system exposed for up to 14 hours while waiting in the emergency room.
But after learning how to administer weekly subcutaneous injections herself, she was safe from possible hospital infections.
Dr. Robert Schellenberg is head of the subcutaneous injection program at Saint Paul’s Hospital, which used a chunk of its research money to fund the subcutaneous injections pilot program starting in May 2009. He recently learned the B.C. Ministry of Health didn’t take on the pilot.
The initiative would save the ministry at least $1.3 million over three years, Schellenberg estimated, mostly from personnel costs for administering in-hospital treatment.
“I gather someone lower down in the ministry said, ‘Well, they’re not going to do any new provincial project,’” he said. “But [the government’s idea] to have each region have its own nurse trainer makes absolutely no sense.”
He said each region would be reluctant to pay for the costs of hiring an employee to train PIDD patients to administer subcutaneous injections.
Similar at-home treatments have been initiated internationally to lower the number of patients visiting hospitals while ramping up health care costs.
“Subcutaneous is the way it’s going around the world,” Schellenberg said. “It’s been taken up like crazy in the U.S. because HMOs [health maintenance organizations] know they can save money.
“It seems like such a retrogressive step not to fund the program, in terms of the whole emphasis on getting people out of hospitals and treated at home.”
But according to the B.C. Ministry of Health, the province funds $35 million annually to Canadian Blood Services for immunoglobulin products, and this includes the at-home subcutaneous treatments, as well as the hospital doses.
Spokesperson for the ministry Kristy Andersen said the drug manufacturer providing free doses of the blood product is extending its program for six months from today to facilitate discussions between Providence Health Care, which allocates money from the ministry to hospitals and to the province.
“The ministry has not received any request from Providence to provide additional funding at this time, but would be happy to review anything that is brought forward,” Andersen said, adding health authorities already receive money above their base budgets for programs such as the subcutaneous injections.
“It is up to the health authority to determine if a home-based program should be established,” she said.
Vancouver Coastal Health, which includes Providence, currently receives $120,000 above the base budget for managing the injection programs.
“Should a health authority determine that such a program would be beneficial, they can implement one, but it must be done safely with the necessary supports in place,” Andersen went on. “At-home infusions require monitoring, training, ongoing support and are not appropriate for every patient.”
She said the ministry hasn’t received a proposal to fund the subcutaneous pilot program, “but if one were put forward we would happy to review it.”
She said Providence will discuss possible government funding at a future health authority meeting, though the program hasn’t been added as an agenda item at any scheduled meetings.
Meanwhile, Bowen fears receiving treatment at the hospital wouldn’t be enough to keep her feeling as healthy as she does while administering her own weekly doses.
“Near the end of the month after going to the hospital, I feel weak when the dose starts to wear off,” she said. “It’s just so much safer if I can continue to do this at home. I can’t even go on a holiday if I don’t have my own treatment.”
The Canadian Immunodeficiency Patient Organization estimates 2,000 people nationally are diagnosed with PIDD, though one in every 1,000 is suspected to have the condition.