HIV/AIDS patients have nowhere to turn for treatment
When Linda (not her real name) heard members of the Newfoundland and Labrador AIDS Committee say patients with HIV/AIDS were not receiving the special care they require, she broke down and cried.
“They were summing up how I’ve been feeling for a long time,” said the Conception Bay North resident who contracted HIV from a boyfriend in British Columbia nearly 10 years ago.
“The health care system here in the province is pretty bad, even for those who are not seriously ill, but for people like me who have HIV or AIDS... it’s downright pathetic. “
Although she has a heavy chest cold, Linda says seeking medical attention is out of the question. Her physician, Dr. Ian Bowmer, an infectious disease specialist, has left the province and the only nurse practitioner for the AIDS clinic in St. John’s recently resigned. The nurse, who has been on a leave of absence, decided not to return to her job. She had been responsible for seeing patients after the disease specialist moved away.
Linda feels going to the emergency department or to a local doctor is just too risky.
“I just don’t have it in me to go see another doctor to get this cold checked. It’s just too stressful,” said the 44-year-old, who moved back to the province so her two children could be near their biological father.
“A regular GP just doesn’t have the expertise or all the background information on my medical history, so what should be like a standard check up usually turns into a complicated ordeal. I know, because it has happened to me all too often. The last doctor I saw told me to stop taking one of my medications and gave me another that, when combined with what I was already taking, caused violent headaches. I thought I was going to die. It took numerous phone calls to my former infectious disease specialist in B.C before I was back on track again.”
Linda says she’s also concerned some doctors might even refuse to treat her and people in the community will find out she has HIV.
“It’s not uncommon for a doctor to send someone like me, who has HIV, to another doctor,” she said. “I’ve heard of that happening many times to others with this disease. My family and close friends know I have HIV and I would never be intimate with someone without informing them first, but that doesn’t mean I want it broadcasted throughout the community. The stigma around it isn’t as bad as it once was, but it’s still there.”
According to Linda HIV/AIDS patients in B.C receive far better health care than those in this province.
“B.C has a really good AIDS treatment centre and province wide drug program where drugs are provided to patients for free,” she said. “There are all kinds of supports and studies being conducted as well. The health care system there is being proactive in the fight against HIV/AIDS, instead of reactive, and they’re looking at ways to keep people healthy. Along with giving people who have contracted it a better quality of life, they know it will be less of a strain on the government and health care system down the road. Too bad it isn’t like that here in Newfoundland.”
Chris Pickard, executive director of the AIDS committee says people living with HIV/AIDS in Newfoundland are feeling abandoned.
“We’re not trying to create panic, but the situation as it is right now is critical,” said Pickard. “People really don’t
know what to do. They have nowhere to turn for proper treatment. “
One day clinics, held in St. John’s on Saturdays, every three to four weeks are currently being offered by out of town physicians, however Pickard says those clinics won’t even cover the number of HIV/ AIDS patients in the province who need medical treatment.
“They can only accommodate around 80 people, but there are about 120 patients with HIV/AIDS, who voluntarily seek treatment at the clinic,” said Pickard.“So what happens to the rest? Where do they go for treatment?”
Apparently concerns over lack of adequate staffing and services at the St. John’s AIDS clinic are nothing new.
The Compass learned that a proposal, which would have addressed all of the above concerns was submitted to Eastern Health by a provincial HIV team, a few months ago, just prior to the 2009-10 budget. A letter of support from the AIDS committee, accompanied it. The letter was also forwarded to Ross Wiseman, minister of Health.
The team, made up of pharmaceutical specialists, nurse practitioner and other professionals put forth three main requests. They included the need for more administrative support (medical secretary) at the AIDS clinic; more time allocated for the nurse practitioner and the need and benefit of extending the scope of duties of the nurse practitioner.
The proposal, which was turned down by Eastern Health, cited the nurse practitioner at the clinic as “playing a vital role in the health and well being of the patients.”
Until a new infectious disease specialist for the AIDS clinic can be found, Eastern Health has asked a number of internal medicine specialists to consult with patients. Linda says that is of little help to some one like her.
“Some of these specialists are on the mainland, so if I happen to get seriously ill, how are they going to be able to help me? Treat me through some kind of consultation by a doctor who is hundreds of miles away? That doesn’t even make sense,” she says.
Linda says HIV and AIDS patients need constant monitoring and consistent checkups. They also require regular treatments of anti-viral drugs to keep their immune systems strong and to guard against diseases like pneumonia.
“All the more reason for the need to have an AIDS clinic staffed with the proper medical people like an infectious disease specialist and a couple of nurses,” said Linda. “Even just going to the emergency room of a hospital that is filled with people who have the flu puts me at risk.”
While there are around 120 HIV-positive patients who have been voluntarily seeking care at the HIV/AIDS clinic, the number of people in the province with the disease is much higher.
“We’re seeing an increase, even in the Carbonear area where intravenous drug users, are contracting the disease,” said Pickard. “The out migration of workers to other parts of Canada has also had an impact as well,” he added. “Escort services are a dime a dozen in some cities and some of the workers are using them and contracting the disease that way and then coming home and passing it onto their spouse.”
On April 15, Pickard, along with other members of the Aids Committee, met with Health Minister Ross Wiseman to discuss their concerns.
“It was a positive meeting at least the lines of communication are opened now,” said Pickard. The position has been posted and hopefully a specialist or two will be hired with in the next few months because right now we’re in a crisis situation.”
Wiseman is expected to get back to the AIDS
Committee chairman sometime this week.
For Linda, news that an infectious disease specialist has been hired couldn’t come fast enough.
“It’s about time the minister got moving on this issue,” she said. “ I heard Ross Wiseman on the radio repeatedly saying he wasn’t aware the nurse had resigned, but she submitted her notice before Christmas, so why didn’t he know? And he knew the infectious disease doctor had left, so what was he waiting for? Look if this were any other illness, other than HIV or AIDS the government and the health care system would be moving a lot faster to resolve it. Anyway the minister has all the information he needs now doesn’t he, so hopefully that’ll get the ball rolling and we’ll get the treatment we need.”