Acing Equity
July 17, 2023
For the patient group Arthritis Consumer Experts, there’s nothing optional about health equity. President Cheryl Koehn and VP Kelly Lendvoy explain.
Cheryl Koehn is the founder and president of Arthritis Consumer Experts (ACE), Canada’s first and largest national patient-led organization that provides science-based information and education programs, and actively advocates on arthritis health and policy issues. A national patient community leader, educator, patient research partner and published author – and having lived with rheumatoid arthritis for over 3 decades – Cheryl understands access and equity – well, in her bones.
With over 30 years experience working in corporate communications and public affairs, Kelly Lendvoy is responsible for aligning and integrating ACE’s educational and advocacy strategies for patients, healthcare professionals, governments, and other stakeholders.
What led you to found Arthritis Consumer Experts, and how has the organization evolved?
Cheryl: At the time there were no organizations run by patients on the ground, and I saw a gap for people like me. I didn’t want to go through my life unsupported, and realized the only way to have the community I wanted was to build it. ACE is now a leading arthritis education and advocacy organization not just in Canada, but also in Europe and the Americas. Our work is featured at scientific meetings. We most recently gave a presentation on health inequities in BIPOC women with arthritis at the European Alliance of Associations for Rheumatology in June 2023. ACE is guided by a strict set of guiding principles, set out by an advisory board comprised of leading scientists, medical professionals, and informed arthritis consumers.
Are there inequities in arthritis compared to other diseases?
Cheryl: Diseases like cancer and HIV get hundreds of drugs listed on the formulary, while it’s a continuous struggle to get reasonable listings for arthritis. It’s not for nothing that we call arthritis the “forgotten child.” Many people still associate arthritis with the creaky joints their grandma had…but, in fact, more than three in five people diagnosed with arthritis are under the age of 65. They don’t know there are more than 100 different types of arthritis. The disease affects people of all ethnicities and genders, though some patient populations – like women and Aboriginal Canadians – are more likely to get arthritis than others. ACE is committed to understanding and raising awareness about inequities in arthritis care related to service delivery, treating, and managing arthritis that exist, are persistent, and in some cases, are growing.
For many years now, you have been publishing an Arthritis Medications Report Card, which compares the provincial drug plans coverage of advanced therapies such as biologics and targeted small molecule medications for inflammatory arthritis. What was the impetus for creating this Report Card?
Cheryl: When biologics first entered the market, my colleagues and I watched the painfully slow review process for access to Remicade [an early biologic for arthritis]. It took 983 days for regulatory approval, with an additional 2 years of waiting for drug plans to list it. We went to Ottawa every month and sat in the director’s office, just like they do in the movies! We wheeled people over in hospital beds. We sent the B.C. Minister of Health a foam-board invoice for $450 million for the community – that’s how much it costs to manage 1,000 people with inflammatory arthritis for 10 years without biologic drugs, including the indirect costs of lost productivity. By comparison, the estimated cost with biologic drugs available is $250 million. With a lawyer’s help, we framed the lack of access as a human rights issue. That was the wakeup call they needed to open up access.
Then we started to notice that not all public drug plans defined “access” in the same way. Some provinces would just give biologics what I call a “token listing,” with very narrow or overly complex eligibility criteria. ACE created the Report Card to make these disparities transparent to the public and spur poorly performing provincial or territorial formularies to get up to speed. We sift through every formulary every month, check on listing updates, and advocate around medications with a negative recommendation. Our basic position is this: if a medication gets Health Canada approval, it means the government thinks it’s good enough for Canadians, so lack of access can’t be justified. Preparing the Report Card is a lot of work, and I look forward to the day we can stop doing it – it would be the ultimate victory for equity in medication access.
“We created the report card to make access disparities transparent to the public and spur poorly performing provinces to get up to speed.”
Kelly: The report card has taken on new meaning as more and more specialty medications for arthritis become available. Public and private plans have identified these medications as key cost drivers, and over the past 10 years many have started tightening coverage. ACE’s role is to educate them about what happens to patients who don’t get access to the medication. We’re also hopeful that the increased use of biosimilars will have a positive effect for both the healthcare system and patients by broadening access for patients who need advanced therapy and addressing the significant and growing cost of biologics.
Can you point to a specific change resulting from the Report Card?
Cheryl: Prior to the report card, Manitoba didn’t publish their formulary online. After creating our first Report Card we compelled them to do it – and they did! Now Manitobans know what their options are.
Kelly: With the high concentration of Indigenous People in the province who are at greater risk of having serious inflammatory arthritis diseases and experiencing health inequities, that moment takes on even greater significance.
How might the pharmaceutical industry help increase equitable access to medications in Canada?
Cheryl: Equity begins at the drug development stage. Preparing for a drug trial today should look very different from even two or three years ago. It’s not enough to claim that “we didn’t have the power to look at subgroups.” Some pharmaceutical companies are adapting to – or even leading – this paradigm shift very well and improving representation in clinical trials and research.
Kelly: Covid exposed inequity fault lines, and many pharmaceutical companies are now having new discussions about what health equity means. They’re reexamining existing data from the patient perspective, and they are joining us, and other members of the arthritis community, in the call for training of healthcare providers to enable the creation of safe spaces for patients, and to ensure the delivery of equitable care.
Do you see a role for patient support programs (PSPs) in helping reduce inequities?
Cheryl: They play a big role. PSPs should get DEI [diversity, equity, inclusion] training, and I think some have started doing that. Last year ACE conducted a patient survey on reimbursement for inflammatory arthritis medications, which uncovered inequities having to do with paperwork. People who are unfamiliar with the bureaucracy of access find it a very difficult process. Once past their doctor’s office, many patients don’t even get to the PSP enrolment stage because of these barriers. PSPs can do outreach work to remind healthcare professionals to include people from marginalized groups, starting with helping patients past the enrolment hurdle.
Kelly: Research shows that BIPOC and other underserved populations are at greater risk of getting diagnosed with inflammatory arthritis and having more severe disease. Some may also have difficulty communicating with their healthcare providers and may feel less comfortable discussing their medications. The post-Covid trend of virtual care could add an extra barrier for these groups. PSPs have an opportunity to provide guidance to their enrolees on how to communicate more effectively with healthcare professionals – and vice-versa.
Is there any overall “call to action” you would like to highlight?
Kelly: Teaching and integrating DEI principles is critical. We now have DEI experts in rheumatology. The healthcare provider community has a responsibility to ask themselves: How can I become the kind of practitioner who delivers appropriate care? The answer lies in following basic DEI principles.
Cheryl: Ultimately, every one of us in the healthcare ecosystem has to sit down and reflect on questions like: Who am I? Am I contributing to inequities through my own belief systems? How do I unlearn those things and relearn that I cannot have different access to medicines from the person sitting next to me in the waiting room? So it’s an internal exercise as well as a commitment to action.
“We need to unlearn our hidden biases and relearn that we cannot have different access to medicines from the person sitting next to us in the waiting room.”