By: Linda Wilhelm

The CADTH meeting is very worthwhile attending as stakeholders from all sectors attend including government, researchers, payers, patients and clinicians. The networking opportunities are equal to those at the Canadian Rheumatology Association’s annual meeting. On my way to the opening session, I was walking in with a Board member from Horizon health, the English health authority board in New Brunswick. The conference provides an opportunity to meet with Canadian Drug Expert Committee (CEDAC) members and have them put a face to patients who provide input and to discuss their concerns about our bias (even if to help minimize some of their concerns which happened at this meeting with a discussion after a session).

This is a striking difference from the last CADTH meeting I attended years ago where former CAPA President, Louse Bergeron and I may have been the only patients in attendance. In contrast, CADTH now provides stipends for patients and waives the registration fee. The patient perspective is expected and even welcomed by many! Fellow CAPA Board member, Annette McKinnon was tweeting and I was posting on Facebook throughout the meeting, hoping to give our CAPA members a flavour of the sessions.

The Federal Health Minister, Dr. Jane Philpott opened the conference, followed by an opening plenary comprised of physicians, including former CMA President Dr. Chris Simpson and Dr. Tom Noseworthy, a friend to the arthritis community. Mr. Noseworthy also received the Dr. Jill Saunders award. In his acceptance speech, he spoke about the need to increase patient engagement. Dr. Deborah Marshall presented on her research around patient reported outcome measures on total knee replacement surgery in Alberta.

I was on a panel for the closing plenary with the Ontario Minister for Long term Care, Dr. Robert Bell, an orthopedic surgeon and Chair of the National Strategy for Patient Oriented Research (SPOR) Steering Committee. In my presentation, I spoke about the importance of patient engagement and how evidence falls short of patient expectations. I am not alone in my disappointment that, with almost twenty years of experience with biologics, we still don’t have the evidence to show they prevent disability and reduce overall health care costs.

While we can all agree that CADTH has improved in their engagement of patients, many other health policy organizations have made little to no progress. If we are to truly transform healthcare in Canada, this has to change. CADTH can help pave the way forward.

Patient Poll highlights concerns with BC Pharmacare

By: Don Mohoruk

A Reference Drug Program was introduced in British Columbia in 1995 as one of the programs that BC PharmaCare implemented to help contain drug costs. Under this program, reference-based pricing was applied to five different classes, one of which is Non-Steroidal Anti-Inflammatory Drugs. Under reference-based pricing, drug plans reimburse the cost of the reference drug(s) in an entire class. The assumption is that medications within a drug class are interchangeable and have the same therapeutic benefits. Most often the reference drug is the most inexpensive drug in the class. This means that if patients want to take a drug which is not the reference, they need to pay the difference between the reference drug and the drug their doctor has prescribed.

A recent Better Pharmacare Coalition (BPC) online poll has found that British Columbians oppose expansion of the Ministry of Health’s Reference Drug Program (RDP). The 858 adult residents polled felt the expansion could compromise patient care. Earlier this year, administrators of BC’s PharmaCare program approved amendments to the Drug Price Regulation that expands the RDP.  In anticipation of this event, the BPC poll was launched to gauge public opinion.

A resounding 82% of those polled felt that PharmaCare  will be implementing a policy that tells physicians’ which medications they can prescribe to patients, even if it goes against the physicians’ opinions regarding what is in the best interest of the patient. The BPC poll also discovered that 76% of respondents were concerned about changing PharmaCare’s RDP to specify a “reference product” that patients must take or they will have to pay the difference on-their-own to stay on the current therapy.

The poll was split equally between individuals with private insurance and those without coverage.  It is important to note that the concerns regarding changes to the RDP program were highest among PharmaCare users and those with a history of chronic disease in their household.

Three new reference drug categories will be launched on June 1 this year.  They are Angiotensin Blocker (high blood pressure), Proton Pump Inhibitor (Gastroesophageal reflux disease – heartburn) and Statin (lowers blood pressure).  On this date, PharmaCare will begin transitioning patients from one to another medication in these groups. By December 2016, the new policy will be in effect.

The BPC was formed in 1997 in response to PharmaCare policy development not being reflective of current medical literature, best clinical practices and the specific needs of patients. The Coalition’s 19-member patient groups work together to promote appropriate access to evidence-based medicines that are proved effective and needed by BC patients. The Coalition has opened a new survey to better understand patient concerns about the BC Pharmacare program. We will report back on these survey results in the next CAPA newsletter!

3 in 1000 Kids on Your Block have Juvenile Arthritis

By: Jennifer Wilson

Can you imagine being a child with juvenile arthritis (JA) in school?

None of your friends have heard of it and your gym teacher says you just need to work harder. You try to keep up, and spend the weekend in pain. You miss a lot of school.

Cassie & Friends Society, a registered non-profit in BC and active partner in the childhood arthritis community, is working hard to change the stigmas kids with JA often face in school. Part of their awareness campaign is to educate children, teachers and school counsellors in elementary schools across about JA with their Kids on the Block (KOTB) Educational Performance Program, a high-energy show featuring a troupe of near life-sized puppets that dress and act like real children (see picture of a recent live performance).

The program’s goal is to help raise understanding about what it’s like to live with JA and to illustrate some of the challenges a classmate with JA might face:  pain, isolation, mobility challenges, vision loss and endless doctor appointments. At the end of the show, kids are invited to talk directly with the puppets, helping them to be candid with their questions while tackling some ‘big’ issues like inclusion, health and disability.

Parents’ feedback on their child’s experience with the show has been very positive. One Prince George father said, “My daughter’s eyes lit up when she heard they were coming. At the time, she was recovering from cataract surgery and was the only kid in the whole school who had to wear an eye patch. To her, the performance was an opportunity for her classmates to finally understand her.”

Another parent from Langley, BC said, “the biggest advantage [of the show] has been the understanding that the school counsellor gained. It really gave Brooke and her a good base to talk about Brooke’s concerns and struggles”

To date, Cassie & Friends has reached over 15,000 elementary school children throughout the Lower Mainland, Prince George, Penticton and Vancouver Island. All performances are offered at no charge thanks to the help of community partners, Mardon Insurance, and Gore Mutual.

Besides helping kids explain their disease, Cassie & Friends hopes the show might spread awareness about the signs and symptoms of Juvenile Arthritis so that kids can get seen and treated more quickly.

For more information on this impactful program, please visit www.cassieandfriends.ca or contact Jennifer Wilson at jennifer@cassieandfriends.ca or 604 617 1382.

A Day in the life of a Patient Advocate

By: Janet Gunderson

As you may recall, CAPA asked their Board of Directors and membership to contact their local Member of Parliament (MP) to make the patient voice heard. CAPA provided a template letter as well as speaking points to help with any discussion.

As a result, I wrote my Member of Parliament, Jerry Ritz, and met with him in North Battleford just before Christmas. I told him what CAPA was and informed him about the prevalence and the severity of arthritis and the fact that arthritis is one of the leading causes of disability in Canada. We talked about a number of issues including the possibility of a national pharmacare program.  Even though Jerry Ritz is a member of the opposition, he pointed out that it is good to meet with opposition members because they can push for things to be included in a bill. Overall, I felt it was a productive and positive meeting.

I also recently met with the provincial Minister of Health in Saskatchewan concerning Subsequent Entry Biologics. CAPA recently published a position paper on this topic and wanted to ensure the provincial Ministers of Health were aware of SEB’s and the concerns we have as patients about their use. I used the CAPA letter template and emailed Minister Duncan, the Saskatchewan Minister of Health.  Fortunately, I was contacted to arrange a meeting.

We decided to have a meeting by telephone because I live five hours from Regina where his office is located. I started off the meeting by explaining what CAPA is and why I had asked for a meeting.  I also took the opportunity to explain that arthritis is over a hundred different diseases and that it is one of the leading causes of disability in Canada. I was pleased to learn that minister Duncan was aware of what Subsequent Entry Biologics were and what some of our concerns were.  He told me that Saskatchewan tries to follow the funding recommendations of The Canadian Agency For Drug Technology and Health (CADTH).  He was well informed on the topic.  It was a pleasant meeting and I appreciated being able to do this from home instead of travelling five hours to Regina for a short meeting.

Both of these examples of advocacy were very easy to do and were done mostly from the comfort of my own home.  It is important that each of us advocate. It may not seem like one voice matters, but it all adds up when a number of us contact our MLA’s and MP’s.  Learn how to Make your Voice Heard by reading through the resources available on the CAPA website.

Chronic Pain Research Network Funded

CAPA is taking part in a new large Canadian network pioneering developments in patient-oriented health care for chronic pain research and care. The Chronic Pain Network is a national collaboration project which will see patients work with researchers, healthcare professionals, educators and government policy advisors to increase care access for chronic pain sufferers and speed up the translation of the most recent research to the reality of care.

Federal Minister of Health Dr. Jane Philpott announced $12.5 million in funding for the Chronic Pain Network on March 31 at McMaster University. The grant was one of five chronic disease networks announced under Canada’s Strategy for Patient-Oriented Research (SPOR), which will be managed by the Canadian Institutes for Health Research.

The Chronic Pain Network is led by Dr. Norm Buckley, professor and chair of anesthesia for McMaster University’s Michael G. DeGroote School of Medicine and scientific director of the Michael G. DeGroote Institute for Pain Research and Care.

“We know that in Canada, the cost of chronic pain has been measured as greater than that of cancer and heart disease combined,” said Buckley. “Although Canada is recognized as a world leader in pain research, the investment in pain research has been the lowest of any developed country. We will be changing that, for the benefit of Canadians.”

Patient-oriented research refers to the investigation that engages patients as partners, puts a focus on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant participants, aims to apply the knowledge produced to improve healthcare systems and practices. CAPA is excited to be an integral partner in the Chronic Pain Network.