New Westminster patients fear home infusion program could be scrapped
Three years ago, Abby Kennedy learned how to stick a needle under her skin to infuse her body with a blood product to boost her immune system.
It’s convenient, healthier for her and saves the health care system money. But now she’s worried she soon won’t be able to do it anymore.
The 67-year-old New Westminster native has primary immune deficiency (PID). Although she was born with it, she wasn’t diagnosed until 1995. The treatment is an infusion of immunoglobulin, which originally involved a trip to the hospital every three weeks or so for up to four hours at a time to receive the blood product intravenously.
But a few years ago, a pilot project was developed through St. Paul’s Hospital in Vancouver, with help from the product’s manufacturer CSL Behring. A nurse was hired to train the patients to administer the immunoglobulin subcutaneously (under the skin) and monitor their medication. So far about 100 of the more than 400 patients across the province have learned how to do it.
The nurse is also a resource that’s easily available for patients if they have a problem or a reaction. The program also delivers the needed paraphernalia to the patients, and the product is picked up every few months at a local hospital, in Kennedy’s case Royal Columbian.
The program has made it easier for Kennedy to deal with PID, a disorder that makes her hesitate to wipe her grandchild’s nose.
Doing it at home also means she avoids going to the hospital for a few hours where she would be exposed to numerous potential infections—she says she contracted pneumonia a couple of times after going to the hospital—as well as freeing up a bed for other patients.
“You spend about three or four hours there, maybe an hour waiting for the product, a couple of hours getting infused and people are coming and going (exposing her to many viruses),” said Kennedy.
New West resident Richard Walters, who is on the executive of the B.C. chapter of the Canadian Immunodeficiencies Patient Organization (CIPO), has been getting immunoglobulin for 34 years. Under the program he does about two treatments a week that take him 45 minutes to complete each time, which isn’t a time saving but the benefits are so much more.
“I can do it at home, I can do it when I want. I’m not going to the hospital every three or four weeks,” said Walters, who also pointed out trips to the hospital frequently require patients to take time off work.
But there are fears the program won’t be around come 2013 because the manufacturer is about to cut off its funding. Recently patients, including Kennedy and Walters, heard the nurse, Adriana Martin, had been told to find a new job as of Jan. 1.
The hospital, however, has denied that meeting ever happened.
Dr. Robert Schellenberg, head of immunology at St. Paul’s, is worried the service will be cut off.
He told CTV News in the long run it should be the provincial health ministry supporting the program, a position Walters and CIPO have taken because the program needs to be province wide and not subject to inconsistent administration by different health authorities.
“For the program not to be in jeopardy there needs to be provincial funding,” said Walters. “We want provincial funding because once you get provincial funding it’s hard to take it away.”
Walters has sent a letter to Health Minister Mike de Jong and said he has been promised a phone call with a ministry official to discuss the program.
“The concern right now for the program isn’t whether or not it is going to get funding, it’s where it’s going to come from,” said Walters.
However, the ministry told CTV in an email it was up to local health authorities to run the program.
Despite the fears for the program’s future, Providence Health, which runs St. Paul’s Hospital, insists it is working on funding.
“The program will continue, and it’s really looking at the best model to support that,” Janice Victory of Providence told CTV News.
But Walters remains skeptical and that’s why he, Kennedy, Schellenberg and CIPO are continuing to lobby for the program.
A study done by Providence has estimated the home infusion program saves the healthcare system $5,736 per patient over three years which would work out to $1.3 million if it was done across the province.
However, Walters points out it doesn’t save hospitals any money because the beds are used one way or another.
There’s also the issue of who should pay for what.
For instance, said Walters, diabetics have to buy their paraphernalia while hemophiliacs do not.
“There’s all sorts of bad examples and good examples of what should be paid for and what shouldn’t,” said Walters.
The blood product is covered by MSP. Walters said he gets a standard amount of about 32 grams a month that costs between $75 and $90 a gram.