How we began
In 2007, a group of patients, dermatologists and others with an interest in skin came together to build an organization because—unlike for many diseases—there was limited support for skin patients. Since then, our network of individuals and affiliated groups has continued to grow.
What we do
Our work is based on 3 pillars:
Patient and family support through education—in the form of this website, a quarterly magazine called Canadian Skin, online tools, education sessions and a biannual conference —and strategic alliances with affiliated groups and industry.
Advocacy for skin patients that involves increasing awareness at Health Canada and the provincial/territorial ministries responsible for health about the issues around skin conditions and diseases and their impact on Canadian citizens. Our Skin Deep: A Report Card on Access to Dermatological Care and Treatment in Canada, 2012 is available online. Current issues include timely access to care, increasing the number of dermatologists, better access to medications and additional training for non-dermatologist physicians and nurses.
Research support through involvement in research projects and by disseminating results through the website and our magazine.
The Canadian Skin Patient Alliance council members defined the mission of the CSPA in September of 2007 as follows: CSPA is a patient-centred organization serving patient needs to enhance care, to promote skin health and to find cures for Canadian skin patients.
How we do it
The CSPA has a paid staff who carry out the mandate set by the Board of Directors at each Annual General Meeting. Committees work with the staff and volunteers as well, on project-specific or long-term activities. Affiliate relations, magazine production, events and day-to-day activities are managed by staff. Non-voting board members from the Medical Advisory Board, Special Advisors to the Board and Canadian Skin Medical Advisors bring specialized expertise to ensure that CSPA information meets the highest standards.
Summary of the CSPA's position on access to dermatological care
- Skin patients should have access to dermatological care within an acceptable wait time and regardless of where they live in Canada. We believe that Canadians seeking treatment for medical skin disorders should not have to wait longer than five weeks to see a dermatologist—the national median wait time reported in 2001. While we recognize that it is not possible for all dermatology services to be available within commuting distance of all Canadians, we believe that phototherapy—the mainstay of treatment for many medical skin conditions—should be available to every Canadian, either in a clinic or as an insured service at home for those Canadians who cannot access a clinic.
- Medical procedures should be insured services for all patients with a medical skin disorder. Treatments for diseases such as vitiligo, a pigmentation disorder with serious social and psychological impacts, need to be covered by the public health system.
- All drugs that are considered the standard of care should be funded without restrictions. Dermatologists need access to the broadest range of alternative medications. A medication that works for one patient may not work for another. In many skin diseases, the body can build up a tolerance to a “tried and true” medication over time and thus new ones need to be available. Also, some skin patients are particularly susceptible to side effects of drugs. Since these diseases are chronic, a patient’s quality of life can be affected dramatically by drugs that are poorly tolerated, less effective or that require the patient to go to unreasonable lengths to administer.
- Patients with rare skin diseases should have access to a medication or medical procedures for which there is reasonable evidence of efficacy, regardless of its regulatory approval status. By definition, the number of patients with a rare disease is too small to allow for the same levels of scientific evidence that are achievable for treatments for more common diseases. In practice, this means that Health Canada will have insufficient evidence to prove that a treatment is effective and safe in patients with rare diseases, according to its normal standards. Drug review committees will also lack a high standard of evidence on which to base a funding decision. In these situations, a lower level of evidence should be accepted for decisions concerning the clinical application, funding and availability of promising treatments for rare skin diseases.
For more information on the state of dermatological care in Canada, read Skin Deep: A Report Card on Access to Dermatological Care and Treatment in Canada.
If you’d like to become active in CSPA projects, visit the Getting Involved section to discover how you can help us best serve Canadian skin patients.
Canadian Skin Patient Alliance
2446 Bank Street, Suite 383
Phone: 613-440-4260 or toll-free 1 877 505-CSPA (2772)