Patient Advisory Council

• Chair: Rachael Manion, Executive Director, Canadian Skin Patient Alliance
• Patient Research Partners: 6 patients (3 of whom will also serve on the Steering Committee)

Mandate

The Patient Advisory Council (PAC) will help build partnerships among patients, the public, and SkIN Canada to promote patient engagement in activities and research supported by the Network. The PAC will ensure that the patient voice is present throughout the activities of SkIN Canada by providing advice relating to:

• Prioritizing research questions
• Planning, delivery, and evaluation of SkIN Canada activities
• Disseminating research results from SkIN Canada projects

Roles and responsibilities of Patient Research Partners on the PAC

The primary role of patient research partners is to provide the public and patient perspective into the Network’s activities and research projects.

PAC Patient Research Partner Commitments

The PAC members meet at least three times a year (face-to-face at an annual meeting and twice by teleconference). Depending on the Network activities, the group members may need to communicate more frequently via email or teleconference.

It is estimated that PAC members will spend 1 hour per month on Network activities, plus 2 hours every 3 months for those members of the PAC who are also on the Steering Committee members. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).

Terms of PAC members are two years but can be renewed.

Biobank Committee

• Chair: Dr Youwen Zhou
• Patient Research Partner: 1 patient

Mandate

Oversee the development and operations of the Biobanking Platform, which includes a biobank registry, a library of biobanking resources, and virtual biobanks

Who else is on the Biobanking Committee?

• Experts in policy, law & ethics (2)
• Biobank leaders (3)
• Researcher

Biobanking Committee Patient Research Partner Commitments

It is estimated that Biobanking Committee members will spend 1 hour per month on Network activities. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).

Canadian Network for Skin disease Trials (C-NeST) Management Committee

• Co-Chairs: Dr An-Wen Chan & Dr Aaron Drucker
• Patient Research Partner: 2 patients

Mandate

Oversee development of the partnership of clinical investigator sites, the data platform, standard operating procedures (SOPs), agreements, and submitted proposals.

Who else is on the C-NeST Management Committee?

• International partner (UK)
• Academic & community-based clinical investigators (3)
• Research administrator / Coordinator

C-NeST Management Committee Patient Research Partner Commitments

It is estimated that C-NeST Management Committee members will spend 1 hour per month on Network activities. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).

Knowledge Translation Committee

Knowledge Translation Committee

• Chair: Dr Jeremy Grimshaw
• Patient Research Partner: 1 patient

Mandate

Provide guidance on the development and implementation of strategies to disseminate the research outputs of Network members to knowledge users.

Who else is on the Knowledge Translation Committee?

• Knowledge user (nurse)
• Knowledge user (clinician)
• Knowledge user (policymaker)
• Knowledge user (researcher)

Knowledge Translation Committee Patient Research Partner Commitments

It is estimated that Knowledge Translation Committee members will spend 1 hour per month on Network activities. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).

Training Committee

Training Committee

• Co-Chairs: Dr Ivan Litvinov & Dr Anie Philip
• Patient Research Partner: 1 patient

Mandate

Develop capacity building strategies, including leadership opportunities, curriculum development for the annual Trainee Boot Camp, and review proposals for trainee knowledge exchanges and travel awards.

Who else is on the Training Committee?

• Graduate student / fellow
• Resident physician / fellow
• Early career researcher

Training Committee Patient Research Partner Commitments

Working Groups

 Mandates

For each primary focus area, the co-chairs will coordinate the priority setting workshop, solicit proposals for Virtual Biobanks and Team Development grants, represent their community on the Steering Committee, and serve in turn as Network ambassadors to their communities.

Working Group Patient Research Partner Commitments

Each Working group will meet at least four times per year. Patient Research Partners are also expected to attend the annual conference & patient engagement workshop (usually June).

Inflammatory Skin Conditions Working Group

• Co-Chairs: Dr Aaron Drucker& Dr Vincent Piguet
• Patient Research Partner: 2 patients

 

Wound Healing, Skin Fibrosis and Regeneration Working Group

• Co-Chairs: Dr Lucie Germain & Dr Julie Fradette
• Patient Research Partner: 2 patients

 

Skin Cancer Working Group

• Co-Chairs: Dr Youwen Zhou & Dr Ivan Litvinov
• Patient Research Partner: 2 patients

Does suffering from psoriasis count as an underlying health issue that makes me more susceptible to coronavirus?

A. Psoriasis by itself does not increase the chances of acquiring COVID-19. It is important to note that many patients living with psoriasis have associated diseases (co-morbidities) that may interfere with their immune response against the virus (such as diabetes, obesity, etc.).

If you are living with psoriasis, it is important to follow the recommendations from the Public Health Agency of Canada and your local public health authorities during this time, such as isolation and social distancing, washing hands frequently and other measures to avoid the potential spread of the virus.

I am receiving phototherapy for my skin disease. Are dermatologists continuing to offer these treatments in their clinics?

A. The decision to continue delivering phototherapy will be up to the individual physician, so you would need to contact your treatment provider to learn about their approach.

The major difficulty in continuing delivery of phototherapy is keeping the environment safe and clean. Phototherapy machines are used many times per day. The machines are touched by many patients, as well as by the operators. The virus is very fragile to disinfectants such as diluted bleach, but it is very difficult to completely disinfect the entire machine after each treatment. The virus may be present up to 5 days on hard surfaces such as metal and plastic, making transmission a real possibility.

While there are many safety precautions that can be taken, including the operators wearing gloves and thorough cleaning after each treatment, this may not be feasible for some phototherapy clinics on the level needed to prevent the spread of the virus. Check with your own treatment provider to see if they will be continuing to offer phototherapy treatment during the COVID-19 outbreak.

I am taking immunosuppressive medications - am I at higher risk for coronavirus? Should I stop taking them?

A. The Canadian Dermatology Association has provided specific guidance for skin patients who are taking medications that affect the immue system. The risks for patients depend on which medication they are taking. Specifically, they note that if you are taking one of the following, you may need to discuss their use during the COVID-19 pandemic with your dermatologist:

• Azathioprine

• Cyclosporine

• Cellcept/MMF

• Prednisone

• Methotrexate (depending on the dose)

• TNF-alpha inhibitor: infliximab, adalimumab, etanercept or certolizumab

• IL-12/23 inhibitor: ustekinumab

Patients who have been prescribed medications that affect their immune system should have received information from their dermatologist about the risks of infection when taking these medications and what to do in the case of an infection.

However, there are also risks associated with stopping these medications, including triggering a flare and/or not recapturing the same success if the medication is restarted later on. At this time, the best information we have suggests that, in general, patients do not stop the medication unless they develop symptoms of an infection - any infection. If you are worried that this might be your situation, please contact your treating physician to discuss the best plan for you.

Ultimately, the best thing that people can do is protect themselves against becoming infected with COVID-19. Patients taking systemic immunosuppressant medication, including biologics, should be very vigilant in following the recommendations of the Public Health Agency of Canada, particularly regarding hand washing, avoiding touching your face, cleaning often-used surfaces, and avoiding public spaces with crowds and individuals with flu symptoms or recent travel history. Your provincial or territorial government will also have its own guidance and make specific resources available to you. It is also important that those living with people taking biologics are also vigilant to reduce the risk of becoming infected.

Dermatologists and other physicians are considering whether to start new patients on systemic immunosuppressant medications or modify treatment schedules. Please consult your dermatologist or other specialist for details about your care.

I keep hearing advice about washing my hands but don't want to trigger my symptoms. What is the best way to keep my hands clean without exacerbating my condition or triggering a flare?

A.  Regular handwashing is key to the prevention of contracting and spreading COVID-19. Proper handwashing means thoroughly washing with soap for at least 20 seconds, making sure to wash the palms and tops of the hands, wrists and between the fingers. There is no need to wash with hot water, which can aggravate skin conditions and offers no advantage in terms of controlling the spread of infection. After washing and rinsing your hands, pat them dry and use a good moisturizer. Moisturizing after washing is key for those with conditions like eczema, psoriasis and other dry and sensitive skin conditions.

In terms of which soap to use, it is not necessary to use an antibacterial soap and soap-free cleansers can be used. The Canadian Dermatology Association and the Eczema Society of Canada have recognized products that are more suitable for sensitive skin or patients with eczema.

If you cannot use soap, hand sanitizers (with at least 60% alcohol) are a good second choice to reduce the spread of infection. These may sting the skin of some patients, including people living with eczema. Consider looking for hand sanitizers with emollients and moisturizers to make using them more comfortable if hands are dry. If your skin disorder begins to flare, use an anti-inflammatory topical regularly.

I don’t want to trigger a flare or worsen my symptoms. What are the best tips for managing the anxiety around the coronavirus?

A. Focus on what you can control. Try to seek comfort in routine — taking your medication and applying creams, etc. Try not to watch too much news or read too much online. You want to stay informed, but after a certain point, it will just exacerbate your stress. Focus on enjoying time with your loved ones at home, over FaceTime, or over the phone. Remember that there is only so much you can do, so focus on protecting yourself by staying home (other than when absolutely necessary) and practicing good hand hygiene.

Because of my skin disorder, I have open wounds. Am I at greater risk of getting coronavirus?

A.An open wound is a potential portal of entry for any infection. While the best information and models of COVID-19 suggest that this virus does not spread through blood, it is wise to take a cautious approach if you are living with open wounds. To help keep yourself safe, make sure to properly dress and cover the wounds. Reach out to your wound care provider or dermatologist for more information on best practices for wound care. Consider using gloves when changing the dressings even if this was not part of your regular practice. It is important to keep in mind that the best tools we have to prevent the spread of COVID-19 are washing our hands and other frequently touched surfaces, avoiding touching our faces, and practising social distancing. Check out the video below from the World Health Organization on how to protect yourself.

Federal

Controlled drugs and substances restrictions (Health Canada): Health Canada, which regulates who can prescribe controlled drugs and substances, including many painkillers, has removed some restrictions so that pharmacists can accept verbal prescriptions from physicians and order refills. (Last updated April 9, 2020)

Non-Insured Health Benefits (NIHB): Pharmacists received a communication that several restricted drugs have become temporarily covered without restrictions and without need for prior authorization. (Last updated March 25, 2020)

Alberta

Dispensing limits: Alberta Health announced that pharmacists in Alberta can begin to give out larger quantities again, up to a 100-day supply, as of June 15. However, for some medications where there are still drug supply issues, pharmacists are encouraged to exercise their discretion in only providing 30 days of the medication. (Last updated: June 10, 2020)

Special authorization extensions: Effective immediately, Alberta Health mandated that all special authorization approvals for Alberta government-sponsored plans that end between now and July 1, 2020 will be automatically extended by 12 months. Additionally, approvals for low income clients for ongoing drug benefits made by the Health Benefits Exception Committee (HBEC) which term between now and August 30, 2020 have been extended by six months. (Last updated: March 19, 2020)

Co-pay changes: Alberta Health recognizes the increased financial pressure that monthly prescribing may place on some patients and has adjusted the co-pay structure for Seniors and Non-Group Coverage plans from a co-pay of 30% to a max. of $25 for a 100-day supply to a co-pay of 30% to a max. of $8 per prescription for up to a max. 30-day supply until further notice. (Last updated March 19, 2020)

Infectious disease screening: Alberta Health introduced a temporary new pharmacy service: Assessment to Screen and/or Test for Infectious Disease. Effective immediately an assessment fee of up to $20 for the Assessment to Screen and/or Test for Infectious Disease may be claimed to a max of five claims per pharmacy per day. (Last updated March 20, 2020)

Biosimilars Initiative delayed: Alberta Health has delayed the implementation of its Biosimilars Initiative  from July 1, 2020 to January 15, 2021. (Last updated April 6, 2020)

British Columbia

Dispensing limits: BC PharmaCare has instructed pharmacists that they are authorized to fill a 90-day supply of medication, where they have enough supplies on hand. (Last updated: May 1, 2020).

Emergency and early refills: BC announced that patients will be able to obtain emergency refills and early refills of their regular prescriptions at pharmacies (two 30-day refills allowed) in an effort to avoid non-essential physician visits and to free doctors to treat COVID-19 cases. The prescription may be active or expired. (Last updated March 16, 2020)

Special authorization extensions: Specific special authorizations that were expiring between March 19 and June 30, 2020 will be automatically extended to October 1, 2020 – any questions about the status of special authorization approvals for other drugs can be directed to the PharmaCare Help Desk at 1-800-554-0225.

Commonly used drugs for skin disorders that will be automatically extended include:

• adalimumab (Humira) for hidradenitis suppurativa, psoriasis and psoriatic arthritis
• certolizumab pegol (Cimzia) for psoriatic arthritis
• etanercept for psoriasis (Enbrel) and psoriatic arthritis (Erelzi)
• infliximab (Inflectra, Renflexis) for psoriasis or psoriatic arthritis
• ixekizumab (Taltz) for plaque psoriasis or psoriatic arthritis
• secukinumab (Cosentyx) for plaque psoriasis and psoriatic arthritis
• ustekinumab (Stelara) for psoriasis

See the full lists of the drugs for which a special authorization will be automatically extended here and here.

Cancer medicine deliveries: BC Cancer pharmacies are making arrangements to deliver medications to patients where possible, to reduce the number of patients who need to come to the center. Patients can contact their pharmacy to arrange for refills. (Last updated March 25, 2020)

Accessing BC PharmaCare: Patients who have lost their jobs and need immediate relief in the form of reduced Pharmacare deductibles/copays , they can make a request to Fair Pharmacare  for  “An Application for Income Review” that could result in adjusted Pharmacare deductible & co-pay amounts without using previous years’ income tax to define Pharmacare deductible and copay levels. (Last updated March 30, 2020)

Manitoba

Dispensing limits: Manitoba Pharmacare announced a limit on the amount of medication that pharmacies can dispense of 30 days maximum per prescription regardless of whether a patient is covered by a private or public drug plan. (Last updated March 19, 2020)

Exceptional drug status extensions: Medications that are available on the public drug plan as an exceptional drug and for which this status is expiring within the next 3 months will have the coverage automatically extended for a 6-month period. Manitoba Health, Seniors and Active Living will not require a physician or pharmacist to apply for renewal of coverage at this time. (Last updated March 20, 2020)

New Brunswick

Dispensing limits: The provincial government removed its previous 30-day limit on prescription fills and refills on drugs where no shortages exist. The provincial government recognized the financial hardship on patients of extra copayments and dispensing fees in its press release . (Last updated April 23, 2020)

Previously, the NB College of Pharmacists had directed pharmacies to limit prescription fills and refills to a 30 days’ supply . (Last updated March 25, 2020)

Special authorization extensions: Special authorization approvals for members of the NB Drug Plans that are due for renewal between March 1, 2020 and May 31, 2020 will be extended until August 31, 2020.

Where special authorization requests do not meet the criteria or are missing information, the NB Drug Plans will send this information by fax to the prescriber. (Last updated March 25, 2020)

New Brunswick Public Drug Plan deductibles & copayments: Effective immediately, and for the duration of the emergency, patients with drug coverage under New Brunswick’s public drug plans will only be responsible for the initial co-payment on a prescription fill or refill. For example, a patient with a 90-day prescription will only have a co-payment for the first 30-day fill. There will be no co-payment required for the second and third 30-day fills on the same 90-day prescription. This applies to all New Brunswickers that are on the public drug plan, including many seniors and low-income individuals. (Last updated March 23, 2020)

Pharmacies are required to track any claims that should have the co-payment waived and re-submit the claims for reimbursement once the pharmacy adjudication system enhancements are in place to accommodate this change. (Last updated April 9, 2020)

New Brunswick Drug Plans applications: Applicants may obtain copies of the application forms for all of the New Brunswick Drug Plans by accessing the Department of Health’s website or may contact the Inquiry Line to request an application form via email. Application forms may be submitted to the New Brunswick Drug Plans for processing via mail, fax or over the telephone.

Applicants may contact the Inquiry Line to obtain information regarding the status of their application or existing coverage (e.g. effective date of coverage, identification number, premium amounts, requests for premium receipts, etc.).

The mailing of identification cards for the New Brunswick Prescription Drug Program will temporarily be suspended. Members must use their New Brunswick Medicare number in place of their identification card at the pharmacy. (Last updated April 8, 2020)

Newfoundland & Labrador

Dispensing limits: The Newfoundland and Labrador Pharmacy Board directed pharmacists to begin filling prescriptions for more than a 30 days’ supply. (Last updated: May 4, 2020)

In March, the Newfoundland and Labrador Prescription Drug Program (NLPDP) has directed pharmacies to limit prescription fills and refills to a 30 days’ supply. (Last updated March 31, 2020)

Special authorization extensions: Special authorization approvals for beneficiaries of the Newfoundland and Labrador Prescription Drug Program (NLPDP) that were due for renewal between March 1, 2020 and May 31, 2020 will be extended an additional 6 months from the most recent expiry date. New requests must be submitted according to the regular process (Last updated April 3, 2020)

NLPDP copayments: The public drug program will only charge a co-payment to patients who use this drug plan for their initial 30-day prescription fill or refill to offset the costs for beneficiaries. (Last updated April 9, 2020)

Nova Scotia

Dispensing limits: As a temporary measure, based on recommendations from the Nova Scotia College of Pharmacists, the Nova Scotia Pharmacare Programs will accept dispensing of smaller quantities than prescribed for all medications for a supply not lower than 30 days. (Last updated March 19, 2020)

Exceptional Status medication extensions: All Exceptional Status drugs that are set to expire between March and July 1, 2020 will be automatically renewed for three months . Usual quantity limits for biologics will continue to apply, depending on the specific coverage criteria limits. New requests for coverage must be submitted through the usual process. (Last updated April 21, 2020)

 Prescription renewals: To make it easier for Nova Scotians to renew prescriptions if required during the current COVID-19 outbreak, effective March 19, 2020, the Department of Health & Wellness began covering the professional service fee for pharmacists to prescribe prescription renewals for all eligible residents with a valid Nova Scotia health card. This is earlier than the original launch date of April 1, 2020. (Last updated March 19, 2020)

Prescription renewal fees: The cost will be covered in accordance with the Pharmacy Service Agreement, which establishes fees of $12 if three or fewer prescriptions are renewed at once, and $20 if four or more prescriptions are renewed. Residents will continue to access their usual drug coverage or method of payment for any prescriptions they have filled. (Last updated March 19, 2020)

Limits on prescription renewal services: As a temporary measure during the outbreak, and until June 1, 2020, there will be no claim limit (cap) on the number of prescription renewal services that can be billed for an eligible resident. Other than the cap being lifted, all other requirements as identified in the Nova Scotia Pharmacy Guide will apply for service claims. (Last updated March 19, 2020)

In-person assessments and prescribing requirement waived: Prescription renewals do not need to be completed in person. To support social distancing and residents in self isolation, the requirement for a patient to meet with a pharmacist for an in-person assessment for a funded clinical service is temporarily waived effective immediately and until June 1, 2020. Pharmacists have been asked to refer to their Standards of Practice and use their professional discretion to determine if a service should be provided without an in-person assessment. (Last updated March 24, 2020)

Ontario

Dispensing limits: The Ontario government announced  it was lifting the restriction on filling more than a 30-day supply of medications as of June 15, 2020, when appropriate (i.e., in some instances, pharmacists may still only dispense a lesser amount). (Last updated: June 11, 2020)

Pharmacists were previously advised to dispense no more than 30 days’ supply of any refill  to discourage stockpiling. (Last updated March 23, 2020)

 Exceptional Access Program (EAP): Any EAP approval for a medication that is expiring between February 1, 2020 and May 31, 2020 will be automatically extended by 90 days. (Last updated March 23, 2020)

Ontario Drug Benefit Program changes to copayments and dispensing fees: Co-payments will return to their previous amounts as of June 15, 2020, when pharmacists are allowed to return to dispensing more than a 30-day supply at a time. (Last updated: June 11, 2020)

Previously, In light of the restrictions on dispensing more than a 30-day supply of medication, the Ontario Drug Benefit (ODB) Program only charged patients one co-payment for a 30-day supply when a patient would usually be able to fill a larger amount. This was intended to change when the supply limit recommendation was removed and pharmacists returned to dispensing more than a 30-day supply, or on June 30, 2020 (whichever was earlier).

Trillium Drug Program deductible relief: The Trillium Drug Program – available for catastrophic drug costs – usually calculates the deductible (equivalent to 4% of the patient’s annual income) with reference to earlier tax information. However, this program will now consider significant changes to annual income in light of the COVID-19 pandemic.

For the 2019/2020 benefit year, households can now apply to have their deductible reassessed if their 2020 income is different from their 2018 income by 10% or more, including for reasons relating to COVID-19. A reassessed deductible based on 2020 income will apply to the 4th quarter of the current 2019/20 benefit year (from May 1 until July 31, 2020).
Deductibles for the 2019/20 benefit can continue to be reassessed based on 2019 income, if that 2019 income is different from the household’s 2018 income by 10% or more.

Trillium coverage applications: The Trillium program is now accepting email or faxed submissions to ease administrative burden and increase speed of review. (Last updated March 23, 2020)

Quebec

Dispensing limits: The Ordre des pharmaciens du Quebec provided directives to its (pharmacist) members to limit dispensing to 30 days per prescription. (Last updated March 12, 2020)

Patient d’exception & medicament d’exception extensions: Those drugs that were covered by the provincial drug plan, Régie de l’assurance maladie du Québec (RAMQ), under their patient d’exception or medicament d’exception policies and for which that status is due to expire will continue to be covered until July 15, 2020. (Last updated March 20, 2020)

COVID-19 testing results: Pharmacists are NOT allowed to tell a patient the result of the COVID-19 testing that might appear on the province’s electronic health record system, Dossier santé Québec (DSQ), unless the test was requested by the pharmacist. (Last updated April 1, 2020)

Saskatchewan

Dispensing limits: The health ministry has lifted the restrictions on dispensing it had put in place earlier in the pandemic. Some drugs that remain in short supply will still be subject to limits. (Last updated May 19, 2020)

Renewals of prescriptions for patients who use the Saskatchewan Drug Plan are restricted, according to the prescription quantity schedule. For all drugs not listed on the Two months or 100 days lists (available here), pharmacists are only permitted by the Ministry of Health to dispense a one-month supply. (Last updated March 19, 2020)

Exceptional Drug Status renewals: Most EDS coverages due to expire between March 1, 2020, and September 30, 2020, will be automatically extended for six months  from the original expiry date. Automatic renewals will take place one month prior to the EDS expiry date and patients will receive a letter with the new coverage dates from the Ministry of Health. This will not apply to short-course drugs (e.g., antibiotics) or drugs with a finite course length (e.g., hepatitis C drugs).

Global HS Covid-19 Registry

The Hidradenitis Suppurativa Foundations would like to announce the launch of the international Global HS COVID-19 Registry to help inform the care of HS patients. Results from this registry will be presented at the 2020 SHSA meeting.

Healthcare providers who care for COVID-19-positive HS patients can enter de-identified data into a short case report form on the study website.

HS patients who have had COVID-19 can also participate by completing a form on the study website.

Please participate enthusiastically and disseminate widely to anyone who cares for HS patients or HS patient groups.

Direct any questions to This email address is being protected from spambots. You need JavaScript enabled to view it..

PsoPROTECT - a registry for psoriasis and psoriatic arthritis patients

PsoPROTECT seeks to rapidly improve our understanding of how factors such as immunomodulator therapies and comorbidities impact outcomes to COVID-19 in psoriasis.

Visit the Canadian Association of Psoriasis Patients to find out more about the registry and how to report a case of COVID-19.

Secure-Alopecia Registry

An international registry for patients with Alopecia to  define the impact of COVID-19 on patients with alopecia being treated with systemic immunomodulating medications. 

Click here to report a case 

Secure-Atopic Dermatitis Registry

An international registry for patients with Atopic Dermatitis to define the impact of COVID-19 on patients with AD being treated with systemic immunomodulating medications.

Click here to report a case 

PEDRA Covid-related pernio-like lesions in Children

This is a survey for all health care professionals taking care of children who have developed acral ischemia/pernio or pernio-like changes in the setting of COVID-19 exposure

Click here to report a case