Family’s scramble to find COVID drug Paxlovid for their ailing dad highlights challenges with access
When Derek McGivern's dad tested positive for COVID-19, he knew the clock was ticking.
Due to multiple medical issues, his 70-something father was at risk, and McGivern knew the antiviral pill Paxlovid - which must be taken within five days of the first symptoms - could help keep him out of the hospital.
Every hour that goes by, you're closer to that limit," said McGivern over the phone from Wallaceburg, Ont., near Chatham. And that's extremely frustrating - because no one knew how to get him what he needed."
With COVID cases soaring in Ontario - reaching an estimated 100,000 new infections a day, according to wastewater readings - Paxlovid is being touted by medical experts as a game changer in the province's pandemic response, a key tool to help protect those most at risk.
But in recent weeks, physicians and vulnerable patients have been struggling to access the medication and are urging the province to ramp up education and outreach efforts and to make Paxlovid more widely available.
What strikes me is how many people don't realize they would qualify for these medications if they had COVID. And, even if they did realize they were eligible, what to do and where to go is not clear ... And it varies by region," said Dr. Tara Kiran, a family physician at Toronto's St. Michael's Hospital.
It is a big problem. We need a public education campaign."
As of March 31, about 400 courses of Paxlovid had been given out in Ontario, and 755 distributed to hospitals. The province, which had previously stated it had about 40,000 courses from the federal government, would not provide the Star with updated figures Friday.
Currently, patients who think they might benefit from Paxlovid can visit their family doctor or one of more than 80 clinical assessment centres in the province for a PCR or rapid test. If the centre has Paxlovid on site, it can be dispensed immediately to eligible, high-risk patients. Or, one of the province's roughly two dozen distribution hubs can courier the treatment to the patient's house.
The drug, which one recent trial suggests cuts the risk of severe disease by about 89 per cent in unvaccinated patients, can interact with other medications, requiring each patient to be evaluated individually.
Still, experts - and patients and their families - who spoke to the Star say the province must do more to get Paxlovid to patients who need it most.
Getting the pills led the McGivern family on a desperate scramble across southwestern Ontario, with Derek's sister shuttling their father John from his retirement home in Wallaceburg, to the assessment centre in Chatham. She even crossed the border to Port Huron, Mich., where Paxlovid is available in pharmacies, in a desperate attempt to give her vulnerable dad, who had already developed a wheeze," the best shot at fighting the virus.
But they were met with confusion at every step.
Everybody's quite kind, but I think the bureaucratic monster here is just bigger in this case," McGivern said. The process is super opaque."
Health Minister Christine Elliott told reporters Tuesday that initially the province received small shipments of the drug. But with more supply, they are looking to expand access, potentially through pharmacies." The ministry would not confirm if this is the plan.
In eastern Ontario, lawyer Michele Allinotte has also faced an uphill battle to get the drug.
Though she is triple-vaxxed, Allinotte has underlying health conditions that could put her at risk of getting severely ill. She did not know Paxlovid was an option until she started to see headlines about the medication.
I didn't know it existed," she said. Lots of people know I have COVID but no one said, Hey, this drug is available.'"
For several days, Allinotte suffered from a number of symptoms, including headaches, congestion, coughing and brain fog, before she knew to call the clinical assessment centre in her area. It took another day before she got through to a health-care worker who said she didn't qualify for Paxlovid.
It's just a lot of hoops to jump through, even if it's available and you're eligible, especially when you feel sick," she said.
Unlike Quebec and the U.S., Ontario has not expanded Paxlovid distribution to pharmacies, a situation the Ontario Pharmacists Association (OPA) is trying to change.
Having more local access to a centre where you could be assessed, tested and prescribed the medication, as well as having it dispensed could be very helpful for people, especially in more rural and remote regions," said Jen Belcher, the OPA's vice president of strategic initiatives and member relations.
The sooner you enable that community pharmacy footprint to participate in this, the sooner you're putting the therapy within reach," she said.
This past week, Kiran booked appointments at a clinical assessment centre for a few patients she believed were eligible for Paxlovid based on age and underlying health conditions.
But they were told they were not eligible and Kiran is not sure why. She worries eligibility criteria is being interpreted differently across the province and would like to see more guidance and education on the new drug.
As vice-chair of quality and innovation at the University of Toronto's Department of Family and Community Medicine, Kiran works with colleagues to create COVID educational materials, from testing to treatments. She said the overall public health guidance on COVID therapies has fallen short for the general public.
Family doctors can play a role in prescribing Paxlovid directly to patients, she said, if they are given additional supports, such as a consult service with a pharmacist or infectious diseases specialist.
Dr. Kate Miller, a family physician who works at Guelph General Hospital and Listowel Memorial Hospital, said the diagnosis and prescribing system can work well, but only if all the stars align."
She described a recent visit with a patient during regular business hours who presented early enough in the course of the disease, was eager for treatment and had no risk of harmful drug interactions. In addition, Miller is an expert in what qualifies a patient for treatment as she helped develop Ontario's eligibility criteria for Paxlovid.
She noted the public health messaging from the province - don't worry about a PCR test, stay home if you feel sick, and wait until you recover - has contributed to the lack of public awareness around the medication.
While many people think they can't get a test, anyone who qualifies for therapeutics also qualifies for a PCR test. So people think they can't get drugs because they think they don't qualify for a test. It's absolutely a confusing system," Miller said.
Another problem with the rollout, said Akwatu Khenti, chair of the Black Scientists Task Force on Vaccine Equity and a scientist in CAMH's Institute for Mental Health Policy Research, is that there was no obvious consideration of equity in the dissemination plan for the drug. He added that community health centres in neighbourhoods hard hit by COVID should have special access to the drug.
In addition, community ambassadors, who have been instrumental in building trust to increase vaccine uptake in these neighbourhoods, should also be involved in spreading awareness of Paxlovid, he said.
If it's a mild COVID, great no worries. But if you have diabetes, asthma, heart disease and you get COVID, come and get your Paxlovid right away so you can actually mitigate the risk that you'll have severe COVID ... That should be a message right across the province," Khenti said.
McGivern said they first tried calling the local health unit and then his family doctor and neither knew where to send him. He then found a clinical assessment centre in Chatham, where a doctor prescribed Paxlovid for his dad.
But when they took the prescription to a local pharmacy no one there knew how to actually get the drug. Eventually, after some Twitter advocacy, and with Chatham-Kent Public Health and local hospital Chatham-Kent Health Alliance on the case, it was arranged that necessary blood work would be done at Wallaceburg Hospital and a Paxlovid hub in Windsor would send the drugs.
Chatham-Kent Health Alliance spokesperson Fannie Vavoulis said in an email that they responded once they understood there was an issue with the centre's initial response, and they've identified a number of improvements" to ensure residents have timely access to Paxlovid.
We regret that this led to unnecessary and additional steps for the patient and family," she added.
The potentially life-saving pills were finally couriered to Derek's father on Thursday night. The family is relieved he now has the medication in hand, but McGivern is concerned about people who are less connected, and persistent. His daughter has a disability, he said, so he's used to being a fierce advocate within the health-care system.
What I worry about is people who don't have that," he said, people who go through one, or two, or three, or four levels of rejection, and just give up."
May Warren is a Toronto-based breaking news reporter for the Star. Follow her on Twitter: @maywarren11
Megan Ogilvie is a Toronto-based health reporter for the Star. Follow her on Twitter: @megan_ogilvie
Kenyon Wallace is a Toronto-based investigative reporter for the Star. Follow him on Twitter: @KenyonWallace or reach him via email: kwallace@thestar.ca