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 June 7-13, 2021

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Up to 4% of people in Canada are impacted by hidradenitis suppurativa (HS). In recognition of HS Awareness Week 2021, the CSPA is collaborating with HS Heroes and Hidradenitis & Me to share new resources about living well with HS and educate the public about the impacts of this devastating disease. 

In 2020, the CSPA released Scarred for Life: 2020 Update – A National Report of Patients’ Experiences Living with Hidradenitis Suppurativa which included critical information about getting a diagnosis, the importance of a comprehensive care approach to managing HS, experience with - and hopes for - treatments, and advice to people newly diagnosed with HS.

This year, we are building on several of the recommendations of the Scarred for Life report. Through our collaboration this year, we are excited to bring you:

  • A social media awareness campaign 
  • A support group discussion about what a cure is to you
  • Discussions with dermatologists that specialize in treating HS
  • Tips and tricks on managing HS, including battlefield (at-home) wound care
  • A live cooking class that focuses on avoiding foods that can trigger HS symptoms

We invite all to help us to spread the word and to participate, to become informed, and to enjoy our week-long schedule of HS Awareness Week Activities.  

(All events are ET zone.  Those visiting illuminations, taking photos, and participating in walks are asked to follow public health protocols.)

June 6 (Sunday) 

 
Sunset - Midnight 
 
Edmonton High Level Bridge - Illuminated purple
 

June 7 (Monday)

 
10:00 - 10:15pm 
 
Niagara Falls - Illuminated purple
Courtesy of the Niagara Falls Illumination Board
 

June 8 (Tuesday)

 
7:00 - 8:15 pm 
 
Support Group:  "What does the word CURE mean to you?"
is the group discussion topic.  
Dr. Raed Alhusayen will speak on the importance of being open to treatment options and following through to regain hope.
Registration is required for this session.  Please register using this link.  
 
 
 
Patient Voice Instagram Channel: HS Patient experiences will be the focus on this Instagram Channel (Tues & Thurs).
 

June 9 (Wednesday) 

 
    activities TBD
 

June 10 (Thursday) 

 
7:00 - 8:30 pm
 
Cooking Class: A chef will lead a live demonstration avoiding ingredients that trigger HS symptoms.
This event requires pre-registration.  Please use this link to register
 
 
 
Patient Voice Instagram Channel: HS Patient experiences will be the focus on this Instagram Channel (Tues & Thurs).
 

June 11 (Friday) 

 
8:00 pm
 
Mississauga City Hall Clock Tower - Illuminated purple
& Celebration Square Digital Messaging 
 

June 13 (Sunday) 

 
Sunset - Sunrise 
 
Toronto CN Tower - Illuminated purple
(Between the scheduled light show on the half hour.) 
 
Sunset - Sunrise
 
3D Toronto City Sign - Illuminated purple
 
Sunset - Sunrise
 
Brampton Clock Tower - Illuminated purple 
 

All Week 

 
 
 
Walking for HS (virtual): Take and submit photos that include Signs of Hope to raise awareness.  Use HS Awareness hashtags including #HSHeroes and #Walking4HS. Tag yourself and your location for an end-of-week social media montage.
 
 
 
Facts, Tips & Tricks for Managing HS: Twitter conversations with dermatologists specializing in HS as well as self-care videos on social media.
 
 
 
London City-Owned Buildings - Illuminated purple
 
 
 
Canada Life Building Toronto - Illuminated purple 
 
    Guelph Market Square - Illuminated Purple  
 
 

HS Proclamations

The following cities have generously issued proclamations: (Click the thumbnail to read the proclamation)
 
 Brampton Burlington Edmonton
Brampton Proclamation Hidradenitis Suppurativa Awareness Week 06.7 13.2021 1   Burlington Proclamation HS Edmonton Proclamation 2021 
Mount Pearl Newfoundland and Labrador  Niagara Falls
 PROCLAMATION HS Awareness Week Mt Pearl Proclamation Newfoundland Labrador Minister of Health HS Awareness Week June 7 13 2021
City of Niag Falls Proclamation Hidradenitis Suppurativa HS Awareness Week 2021 1
Ottawa  St. John's Toronto
OTTAWA Proclamation 2021 Hidradenitis Suppurativa Awareness Week HS st. Johns NL Proclamation 2021 1 HS Awareness Toronto Proclamation 2021 
 
CPSA
HS Heroes
Hidradenitis & Me

It’s tough to have a skin condition. The impact of living with a skin condition is much more than “skin deep”, though. The weight on the emotional and mental health of people affected, and especially those who are children and youth, can be profound.

Imagine not being able to take a hot bath or shower, or go swimming with friends, or participate in your favourite sports. Imagine having to avoid wearing certain types of clothing and not being able to eat some of your favourite foods.

When you know better, you do better. The Shed the Shame campaign is dedicated to creating awareness of the social, emotional and mental health impacts of living with skin conditions, diseases or traumas. It is hoped that all Canadians will have a better awareness of all the effects of skin disorders and can be more sensitive toward and connected to individuals with one.  

The 2021 Campaign aims to take those quiet whispers about people living with visible skin conditions and bring them out into the open and encourage conversations!  So #ShedTheShame and click on the image to share your story.

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Acknowledgments

The Canadian Skin Patient Alliance is grateful for the support of the following for helping make this campaign happen. 

 AbbVieLogo Coated  novartis  ucb
  galdermalogo  
 algonquin college logo  The students of DIG Agency in Algonquin College’s Advertising program

As part of our Advocacy work, the CSPA often prepares submissions on consultations run by governments across Canada on important topics that affect skin patients. 

CSPA supported a joint submission to the federal government's rare disease drug strategy consultation in March 2021 asking the federal government to include cancers - and rare cancers, in particular - in the strategy.  
 
The CSPA signed on to a joint letter from cancer patient organizations earlier this year regarding increases to the Canada Health Transfer. A copy of the letter was sent to the minister of health, deputy minister, and Chief Medical Officer or Chief Public Health Officer of each province

CSPA Federal 2021 Pre-budget Submission - February 2021 (pdf)

PMPRB Guidelines Submission - August 2020 (pdf)

CSPA Federal 2021 pre-budget submission - August 2020 (pdf)

Ontario Pre-Budget Submission - March 2020 (pdf)

PMPRB Submission Guidelines Consultation (Drug Pricing) - Feb 2020  (pdf)

Hidradenitis suppurativa (HS) is a devastating inflammatory skin disease that produces discharge and a foul odor from many acute and chronic lesions. Up to 4% of Canadians live with HS. The painful lesions that are characteristic of HS appear in the skin folds, which makes activity and wearing comfortable clothing very challenging. It is often mistaken for boils, ingrown hair, a skin infection, generally poor hygiene, or a sexually transmitted infection. 

The CSPA launched Scarred for Life: 2020 Update – A National Report of Patients’ Experiences Living with Hidradenitis Suppurativa in May 2020. The HS community has seen some gains since our baseline report on the disease in 2017 – for instance, the median time to diagnosis has decreased from 9 years to 7 years. However, patients continue to visit several different healthcare providers multiple times before receiving a diagnosis. Importantly, awareness about the disease continues to grow, but this is still a very long time for patients to wait to have their disease properly identified and open up the possibility of a tailored treatment program. HS is managed through a combination of surgery and medications, including one biologic available to treat HS in Canada. Ongoing research into the disease brings the promise of better care and disease management. In the meantime, the disease continues to have significant impacts on the lives of patients. More than 4 out of 5 survey respondents reported that their condition had a negative impact on their work performance, their social lives, and their ability to be intimate with a partner.

Through this report, the CSPA has identified 11 recommendations to healthcare providers and policymakers that will improve awareness about HS and care and management of the disease and the lives of HS patients. 

The Report 

 Read the Full Report :  (Click on the image) 

report cover english

 

Exec Summary and Recommendations cover

 

Knowledge and Translation

 The CSPA presented a poster at the 2020 Symposium on Hidradenitis Suppurativa Advances.  See the poster here.  

The CSPA is pleased to have a poster accepted for the 2020 CADTH Symposium.  See the Poster here and our abstract here. 

The CSPA shared the findings of the report with the Canadian Pain Task Force as part of its consultation on a national approach to pain. Read the CSPA’s message here.

Other Resources

We have several videos on our YouTube channel that we featured during HS Awareness Week 2020.  Please follow this link to our YouTube channel to check out the  following videos:

   

CSPA position statement* on appropriate access to care and affordable treatments for skin patients in Canada:

  • We believe that all patients living with conditions that affect the skin, hair and nails have a right to timely access to care and affordable treatment, as decided by their health care professional, in consultation with the patient. These decisions should not be based on where you live in Canada nor on your financial means. No one should be denied the care they need because they cannot afford it.
  • We believe that the process of bringing new treatments to market takes too long and is too complicated. Once a drug is deemed effective and safe, it should be readily available to those who need it.
  • We believe that health care professionals need a range of medication options to treat patients appropriately. A treatment that works for one patient may not work for another. In many chronic skin diseases, the body can build up a tolerance to a ‘tried and true’ medication over time and thus new ones need to be continually available.
  • We believe that the “step process” for treatment coverage can put undue hardship on the patient and on the health care system. If one is living with a moderate to severe condition, it is clear that a topical will have limited effectiveness and that the health care professional should be allowed to accelerate the steps without compromising coverage.

We ask politicians to consider these issues as they implement changes to the health care system while meaningfully engaging patients in these changes.

*Position statement developed specifically for upcoming provincial/territorial elections

Approved by the CSPA Board of Directors in May 2018

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