Patience Magagula says every day, for more than 15 years, she has taken a pill to treat HIV.
Having arrived in Canada after fleeing a 2007 coup in Zimbabawe, she says receiving treatment shortly after being diagnosed was “a blessing in disguise.”
But Magagula says the pills are daily reminders of her condition, and she wishes she and others living with the human immunodeficiency virus in British Columbia had more access to another treatment option.
Magagula is one of several patients, doctors and advocates who launched a letter-writing campaign on Monday, urging British Columbians to pressure their MLAs to push for increased access to a first-of-its-kind, long-lasting, injectable HIV treatment called Cabenuva.
“Injectable treatments can release people from stigma and fear of violence, just by providing privacy and flexibility in how and when to take their medication,” said Magagula, the founder and executive director of the Afro-Canadian Positive Network of B.C., which advocates for people of African descent living with HIV.
“Having treatment gives people freedom.”
In April, the B.C. Centre for Excellence in HIV/AIDS (BC-CfE) at St. Paul’s Hospital in Vancouver, which approves doctor’s requests for patients to get Cabenuva, said the drug is available but suitable only for a small number of people due to concerns about safety, efficacy and the risk of developing drug resistance.
Eligibility requirements are evaluated as necessary using evolving clinical evidence, according to the B.C.’s Ministry of Health.
But some patients, physicians and advocates say the BC-CfE isn’t being transparent about why many requests for the medication have been denied.
“People living with HIV are still waiting to be able to make basic decisions about the medications that are best for them,” said Sarah Chown, executive director of AIDS Vancouver, a non-profit that supports people living with, and affected by, HIV across the Lower Mainland.
The Early Edition6:12AIDS Vancouver campaign for better HIV treatment options in B.C.
Featured VideoBritish Columbia remains the only province in Canada where not everyone living with HIV has access to the latest and most effective treatment methods. AIDS Vancouver is hoping to change that with a new campaign.
Number of approved patients unknown
While there is no cure for HIV — a sexually transmitted virus that breaks down the body’s ability to fight infection and disease — medication can control its progress.
Cabenuva, the brand name for a mix of the drugs cabotegravir and rilpivirine, is the only long-lasting drug option for HIV patients in Canada that does not also require daily oral pills, according to Health Canada. It is injected every one or two months by a health-care provider.
It’s unclear how many people in B.C. are taking Cabenuva, which was approved for use in Canada in March 2020.
B.C. is the only province that doesn’t fund Cabenuva in its drug formulary, and patients in many other provinces can receive it directly from their doctors.
In April 2023, three to five people in B.C. had authorization to receive Cabenuva, BC-CfE executive director Dr. Julio Montaner told CBC News. By comparison, Chown says, advocates in other provinces like Alberta and Ontario have told her the number of people taking it is well into triple digits.
Dr. Brian Conway, medical director at the Vancouver Infectious Diseases Centre, says the BC-CfE told him and others in a summer technical briefing that there were 12 patients on the drug and eight applications under review.
The BC-CfE would not confirm that figure, but told CBC News it approves approximately 40 per cent of all applications submitted by physicians.
Applications are reviewed on a case-by-case basis due to the clinical eligibility requirements and the need to keep the drug cold during transport and storage, a BC-CfE spokesperson told CBC News in an emailed statement in October.
“This approach has been adopted to ensure the treatment is appropriate for the patient based on the criteria based on clinical trials and the provider is aware of and prepared for the additional visits and related follow up,” the spokesperson said.
Reasons for rejections
Conway says the BC-CfE is rejecting applications that it says meet the clinical criteria but don’t prove a patient can’t continue on oral medication.
It’s a requirement Conway and Chown say limits patients’ and doctors’ ability to decide what’s best, together.
“They have never met these patients,” said Chown.
Conway says he has submitted 15 patient applications for Cabenuva to the BC-CfE since 2020. None have been accepted, with six recent rejections citing a lack of evidence that oral pills weren’t working for the patients.
“Looking at this globally, it appears as if the individuals who are adjudicating such matters at the Centre for Excellence have essentially made up their minds that this is not a therapy that they want to see used in British Columbia,” Conway told CBC News.
In the October statement from the BC-CfE, the spokesperson said applications are rejected for “a variety of reasons.”
During a private meeting and briefing with doctors and advocates this summer, the BC-CfE said most rejections were due to clinical reasons, according to Conway and Chown. Other barriers raised included the drug’s higher cost compared to pills, and the need for infrastructure to keep it cool, they said.
Conway said many clinics, including his own, have the equipment and experience to keep drugs cool and they have done so for other medications.
‘We see people dying every day’
While Magagula hasn’t decided whether Cabenuva is the right choice for her personally, she says increasing access and transparency around the drug will save lives.
She says many in B.C.’s Black and African diaspora communities, particularly women, don’t seek HIV treatment or won’t renew their prescriptions due to stigma, fearing losing their jobs or experiencing violence if a partner or family member found their pills.
“We see people dying every day, and it’s very depressing, very emotional and very traumatizing,” said Magagula.
She and Chown hope the letter-writing campaign will encourage elected officials to ask questions about increasing access to Cabenuva.
“People feel, and I also feel, that we are being shut out of decisions about our own health,” Magagula said.