Scleroderma Canada - Fall 2016/17 by Eric Pezik

WINTER ISSUE 2016/2017

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PAH PATIENTS FEAR DELAY TO NEW THERAPY

Walk,Run, or Ride LETâ&#x20AC;&#x2122;S SET A RECORD IN 2017

Governments across Canada urged to grant access to treatment option

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FACTS ABOUT MEDICAL MARIJUANA Answers to some of your questions

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CELEBRATING NATIONAl CONFERENCE Record attendance by participants around the globe

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SNAPSHOT OF JUNE AWARENESS

Toll Free 1-866-279-0632

facebook/SSCanada

info@scleroderma.ca

twitter/SclerodermaCAN

A Message from our

President

2016 Board EXECUTIVE COMMITTEE President Michelle Richard Vice President Advocacy & Public Relations Maureen Worron-Sauvé

New Look, Same Wonderful Family

Treasurer Catherine Fortuné Secretary Helen Goerzen Executive Director Anna McCusker DIRECTORS AT LARGE Mary Beth Clark Susan Dyck Stephen Kulakowsky Melissa Patton David Queen David Sauvé PROVINCIAL PRESIDENTS Gaetan Baril

Jason Doucette

Louise Goulet

Bronwyn Lawton

Gillian Little

Rosanne Queen

Rebecca Wissenz

2 | Scleroderma

Michelle Richard

he term “connective tissue” is familiar to everyone in the scleroderma community. In fact, the words are right there in the opening line of Scleroderma Canada’s guiding document: “Scleroderma or systemic sclerosis is a chronic, progressive connective tissue disease.” Recently, I began thinking about the concept of connective tissue in a different light. As individuals living with scleroderma and caring for people living with scleroderma, we share so many thoughts, experiences, frustrations and triumphs. In a very real sense, there is powerful connective tissue pulling us together and knitting us into a welcoming, supportive, inclusive and caring family that stretches across the country. Not surprisingly, I have particular appreciation for the volunteers of the family, the people who play such important roles in the progress of Scleroderma Canada and our provincial organization partners. My fellow Scleroderma Canada board members and the presidents and board members provincially do wonderful work. They raise awareness and funds. They support patients in countless ways. They lead our organizations with wisdom and strength. On the left side of this page, you’ll see the names of some of those amazing volunteers. Farther along in these pages, you will see stories that reflect the efforts of dozens of other volunteers including Nancy Morency, the indomitable chair of the Spirit of Blue event, and those responsible for the successes of the Walk or Run in the Park events and the National Scleroderma Conference in Montréal. While the strong character and connection of our scleroderma family has been a constant this year, we have seen a change in the name and look of

Canada – National News WINTER 2016/2017

our national organization. We are thrilled that this issue of Scleroderma Canada is the first to feature our organization’s new logo. The three-part design of the circle, hand and maple leaf represents both the challenges and the strengths of our community. The hand, of course, is where we often experience the first signs of scleroderma, but it is also what we extend to welcome, to comfort and to assist. The leaf represents our national identity and unity, certainly, but also the fragility and changeability of our skin. In that way, the leaf shows how something can remain beautiful and captivating even through the ordeals and changes of the seasons. And finally, all of us are the circle, this magnificent scleroderma family from coast to coast to coast. Together, the people in that circle will continue to pursue our key priorities in 2017: raising awareness, education and advocacy. A year from now, I believe we will look back on 2017 as the year when our advocacy work came of age and when our continuing medical education efforts built on the success of our CME program at the National Scleroderma Conference. We will also be able to celebrate great progress in educating the broader community on the facts and realities of scleroderma. Just watch for the impact of new events like Spirit of Blue and the growth of our Scleroderma Awareness Month program in June, to name just two examples. Thank you for being part of Canada’s national scleroderma family. All the best of the season from everyone at Scleroderma Canada. i

Michelle Richard Michelle Richard President

patient

survey

your assistance is greatly appreciated

Scleroderma Support GroupLeader Leader Survey – Part II Scleroderma Support Group Survey – Part II

PRINCIPAL INVESTIGATOR: Dr. Brett Thombs -INVESTIGATORS : Ms. Vanessa Delisle, Ms. Stephanie Gumuchian, Ms. Nicole Pal, Dr. COPRINCIPAL INVESTIGATOR: Dr. Brett Thombs Ghassan El-Baalbaki, Dr. Vanessa CO-INVESTIGATORS: Ms. Vanessa Malcarne Delisle, Ms. Stephanie Gumuchian, Ms. Nicole Pal, Dr. Ghassan El-Baalbaki, Dr. Vanessa Malcarne

WHO?

v We are looking for people who have been diagnosed with scleroderma and are currently leading WHO?

We are looking for people who have been diagnosed with scleroderma and are currently leading a scleroderma a scleroderma support group to complete a 15-20 minute anonymous online survey assessing their support group to complete a 15-20 minute anonymous online survey assessing their experiences as a support experiences as a support group leader.

v

v v

group leader.

WHAT? WHAT? Support groups are intended to provide a setting where Support groups are intended to provide a setting where people with scleroderma can give and receive people with scleroderma can give and receive emotional emotional and practical support, and learn new ways of coping with their illness. and practical support, and learn new ways of coping with their Scleroderma illness. Canada and the Scleroderma Foundation in the US would like to increase the availability and Scleroderma Canada and the Scleroderma Foundation in the effectiveness of scleroderma support groups by providing training and support to group leaders. US would like to increase the availability and effectiveness of To make this happen, we must broaden our understanding the experiences of current scleroderma support scleroderma support groups by providing training andofsupport group leaders. to group leaders. To do this, it is important to broaden our understanding of the The aim of the Scleroderma Support Group Leader Survey is to assess the training and support needs of present experiences of current scleroderma support group leaders. scleroderma support group leaders. This survey is different from Part I of the survey, which was administered The aim of the Scleroderma Support Group Leader Survey is last year. If you completed Part I, please also complete Part II. You do not need to have completed Part I of the to assess training supportPart needs of present surveythe to be eligibleand to complete II. scleroderma support group leaders. This survey is different from WHEN? Part I of the survey, which was administered last year. If If you are interested participating in this research project and completing the survey, please visit the following you completed Part I,inplease also complete Part II. You do link which will take you directly to the survey: not need to have completed Part I of the survey to be eligible to complete Part II.

https://survey.co1.qualtrics.com/SE/?SID=SV_9zX1Ozg8uGD3z5H

WHEN? v If youIf you arehave interested in participating in this research project and survey, please click any additional questions or concerns about the survey, please docompleting not hesitate tothe contact the members of our research team listed below: on the following link which will take you directly to the survey: MS. NICOLE PAL https://survey.co1.qualtrics.com/SE/?SID=SV_9zX1Ozg8uGD3z5H Telephone: (514) 340-8222 ext. 6813; Email: nicole.pal@live.com

v If you have any additional questions or concerns about the survey, please do not hesitate to OR

contact the members of our research team listed below: MS. VANESSA DELISLE MS. NICOLE PAL Telephone: (514) 340-8222 ext. 6812; Email: vanessa.delisle@mail.mcgill.ca

Telephone: (514) 340-8222 ext. 6813; Email: nicole.pal@live.com

THANK YOU - your participation and time is greatly appreciated and most helpful. OR

MS. VANESSA DELISLE Scleroderma Canada – National News WINTER 2016/2017 | 3 Telephone: (514) 340-8222 ext. 6812; Email: vanessa.delisle@mail.mcgill.ca

caregiver

survey

FAMILY and friends of scleroderma patients

Scleroderma Support Group Leader Survey – Part II A Survey of the Informal Caregiver Experience

PRINCIPAL INVESTIGATOR: Dr. Brett Thombs CO-INVESTIGATORS: Ms. Vanessa Delisle, Ms. Stephanie Gumuchian, Ms. Nicole Pal, Dr. Ghassan El-Baalbaki, Dr. Vanessa Malcarne PRINCIPAL INVESTIGATOR: DR. BRETT THOMBS CO-INVESTIGATORS: MS. DANIELLE RICE AND Ms. MARA CAÑEDO

WHO?

v We are looking for people who have been diagnosed with scleroderma and are currently leading WHO?

a scleroderma support group to complete minute anonymous online survey assessing their We are seeking current or past informal caregiversaof15-20 people diagnosed with scleroderma to complete a 30-40 experiences as a support group leader. minute anonymous online survey about their experiences providing care and support for a family member or

v

v v

friend with scleroderma.

WHAT? An informal caregiver is someone who provides support on an unpaid basis for a family member or friend with a Support groups are intended to provide a setting where health condition. people with scleroderma can give and receive emotional and practical support, and learn new ways of coping with WHAT? their illness. Informal caregivers provide unpaid support and care for a family member or friend with a health condition. CurScleroderma Canada and the Scleroderma in theof people with scleroderma. rently, there are no organized support services forFoundation informal caregivers US would like to increase the availability and effectiveness of scleroderma support groupssurvey by providing and support The purpose of the present is to assesstraining your experiences in helping to care for somebody with scleroderto group leaders.difficult challenges, support needs, and the types of services that could be put in place to support ma, including To docaregivers. this, it is important to broaden our understanding of the experiences of current scleroderma support group leaders. We will use the information gathered theseLeader surveys Survey to work towards developing, testing and distributing The aim of the Scleroderma Supportfrom Group is effective support services to informal caregivers of people with scleroderma. to assess the training and support needs of present scleroderma support group leaders. This survey is different from WHEN? Part I of the survey, which was administered last year. If you completed Part I,inplease also complete Part II. You do If you are interested participating in this research project and completing the survey, please visit the following link which will take you directly to the survey: not need to have completed Part I of the survey to be eligible to complete Part II.

https://survey.co1.qualtrics.com/SE/?SID=SV_4UYvHOBAqps04tf

WHEN? v If youIf you arehave interested in participating in this research project and survey, any additional questions or concerns about the survey, please docompleting not hesitate tothe contact the please click on the following which will take you directly to the survey: members of ourlink research team listed below: MS. DANIELLE RICE https://survey.co1.qualtrics.com/SE/?SID=SV_9zX1Ozg8uGD3z5H Telephone: (514) 340-8222 ext. 6811; Email: danielle.rice@mail.mcgill.ca

v If you have any additional questions or concerns about the survey, please do not hesitate to OR contact the members of our research team listed below: MS. MARA CAÑEDO Email: mara.canedo@mail.mcgill.ca

MS. NICOLE PAL Telephone: (514) 340-8222 ext. 6813; Email: nicole.pal@live.com

THANK YOU - your participation and time is greatly appreciated and most helpful. OR

4 | Scleroderma

MS. VANESSA DELISLE Canada – National News WINTER 2016/2017 Telephone: (514) 340-8222 ext. 6812; Email: vanessa.delisle@mail.mcgill.ca

PATIENT

ADVOCACY

ADVOCATE

Unified Voice can make a Difference

here’s an old saying that laws are like sausages, it’s better not to see them being made. Many people feel the same way about the policies that shape our healthcare system. At Scleroderma Canada, not only do we want to see the sausages being made, we want to have strong input on the recipe as well. The policies that direct the medications, protocols and resources that shape the care we all receive as patients are not created in a vacuum. They are debated, negotiated, argued and influenced every day in meeting rooms across the country. The Canadian scleroderma community needs to be in those rooms when the conversation is about the care and treatment of people living with scleroderma and its related conditions. That’s what our advocacy work is all about. In the following pages, you’re going to see two articles. One is about a specific challenge in treatment policy. The other is about the solution to that challenge and others like it. First, you’ll read a piece authored by Ryan Clarke of Advocacy Solutions. Ryan points out that the “ability to effectively advocate is a fundamental requirement in the not-for-profit health sector.” Advocacy, in this context, means telling our story to key people and organizations in a way designed to influence their policies,

Maureen Worron-Sauvé Vice President Advocacy & public relations

practices and decisions. Why is this kind of work so important to the Canadian scleroderma family? Because, to quote Ryan again (and probably at least one of your grandparents), “The squeaky wheel gets the grease.” Our national and provincial health organizations can and do learn from patient and patient-group input. Our job – individually and collectively – is to speak as clearly, intelligently, strategically and credibly as possible so they will listen to our message, learn about our experiences, understand our needs and then react to our positions. The second article you’ll read is an example of advocacy in action. We are

in the middle of what is turning out to be a long and complex process of making the best treatments available to Canadians affected by pulmonary arterial hypertension (PAH), including people living with scleroderma. If we are going to be successful, we have a lot of jurisdictions we need to influence (remember that health policy is largely provincial) and a lot of advocacy work to do. My colleagues at Scleroderma Canada and I believe that an irreplaceable ingredient in our ultimate success will be the sheer number of people we are able to engage. And that’s where you come in. We are working locally, provincially and nationally with governments, corporations, other advocacy groups, media and other sector organizations like the pan-Canadian Pharmaceutical Alliance (pCPA). We simply need more soldiers. If you would like to learn more about the issues and opportunities that are driving our advocacy work, please reach out to Scleroderma Canada. If you would like to lend your wisdom and voice to our advocacy efforts, please let us know. If you would like to receive training and become involved in the kinds of conversations that change minds and policies, please raise your hand. There is work – important work – to do and we need even more committed people to do it. i

Scleroderma Canada – National News WINTER 2016/2017 | 5

PATIENT

ADVOCACY

A Unified

Voice

The three steps to ensuring our issues are heard Ryan Clarke, LL.B.

he ability to effectively advocate is a fundamental requirement in the not-for-profit health sector as organizations like Scleroderma Canada seek to represent the interests of their membership, whether it be with key decision-makers in government or other stakeholders that have an impact on their issues. This article will review the importance of patient group advocacy, as well as outline the essential elements needed to adequately engage.

We begin with a definition of the word itself. According to the Canadian Oxford Dictionary, advocacy is verbal support or argument for a cause or policy. I typically describe it as telling your story to someone, through various means, with the express purpose of compelling that person to do (or not do) something. It is a process that almost always takes time to realize tangible results and the way it is done is very personal to your own style and comfort level. So why is advocacy important? Well, quite simply, the squeaky wheel gets the grease. Health officials in government react to those credible patient groups who can most effectively bring their issues to

6 | Scleroderma

the forefront of the public agenda, and the truth is if you don’t engage, some other organization will and you’ll miss the opportunity. It’s also important because governments will do what they want (or they’ll do nothing) unless groups intervene in the process. So from the outset, it should be clear; choose not to advocate for what you think is important, and I guarantee the result – nothing will happen. But take a chance and engage, and you just might be successful. Patient groups need to ensure coordinated engagement in health issues at both the national and provincial levels, as well. Although health care is primarily the responsibility of the provinces, an organization like Scleroderma Canada has a critical role to play in representing the unified voice of patients, emphasizing equity and consistency in the provision of those services. There are 3 steps in creating the foundation of an effective advocacy plan and as you will see, each step requires focus to ensure you don’t lose sight of your objective.

Canada – National News WINTER 2016/2017

1. Key messages The first thing you need to do if you are going to advocate to anyone about anything, is determine what you need to say, either in writing or orally. These are your key messages. I recommend three key messages that explain the salient points of your issue in easy to understand language. Each of those key messages should consist of 25 words or less and be written in a clear, compelling, concise (focused) and consistent manner. They represent the essence of what you want a decision-maker to remember and respond to around the issue presented to them. To ensure even greater focus, I suggest patient groups craft their three key messages to answer the following questions:

i. What is the problem, challenge or issue? Or what are we here to talk about? ii. What is the impact of the problem? Or why is this problem important? iii. What would it look like if we solved the problem? Or what’s in it for the decision-maker?

PATIENT

ADVOCACY Lastly, make sure that the language you use in your key messages is focused on how you want the recipient to perceive your issue. Use subjective language, not just facts, to frame the problem in such a way that people will be drawn in by the words you’ve chosen.

2. Advocacy tools Once you’ve decided what you want to say, you need to determine the means or vehicles through which you should deliver your three key messages. I call these advocacy tools, and they represent the core of any effective advocacy plan. Anything a patient group uses to communicate with members, supporters or people outside the organization is a potential tool. Examples include texts, emails, in person meetings, websites, newsletters, petitions, postcards, news releases and, of course, social media. With your advocacy tools, you want to create what is known as a layering effect, to layer each tool on top of the next in a very focused manner in an attempt to elevate the noise level around your issue. You don’t want to just randomly start trying everything you can think of to get your key messages in front of decision-makers. Instead, determine which advocacy tools you are able to use or need to develop, and then begin to link them together in a way that focuses on systemic layer building. It’s also important to give some thought to developing advocacy tools specifically for grassroots action. Social media and various e-advocacy programs are good examples of ways in which members or supporters can become engaged at the local level with their elected representatives, for example. It’s an important component you’ll likely want to build in to the various advocacy tools at your disposal.

3. One ‘ask’ This is the goal of any advocacy plan, to be able to ask a decision-maker for the one thing you need them to do, not a list of what you want from them. It is at this stage that most organizations engaged in advocacy particularly fail to be focused enough in articulating what exactly they need. Instead, they present a wish list of all of the things they want from the person to

“in advocacy, the less you ask for and the more specific you are, the more likely you are to succeed.” whom they are advocating. It may sound contrary to what most of us believe, but in advocacy, the less you ask for and the

more specific you are, the more likely you are to succeed. Your ‘ask’ also needs to be tangible, something that can be measured, and this is where you cannot be too focused. For example, if your ‘ask’ is to have a piece of legislation amended to include the word shall instead of may, making an action required instead of optional, this is both significant and very specific. That’s the level of precision that every ‘ask’ should seek to encompass. Scleroderma Canada has a strong commitment to advocacy. I am confident that the organization will continue to invest the time and effort to build its respective advocacy capacities to serve the best interests of the members. i

Scleroderma Canada – National News WINTER 2016/2017 | 7

PATIENT

ADVOCACY

PAH Patients Fear Delay TO NEW THERAPY Governments across Canada urged to grant access to treatment option

anadians affected by pulmonary arterial hypertension (“PAH”), including those living with scleroderma, are pleased with the recent Common Drug Review (“CDR”) recommendation to reimburse Uptravi (selexipag). However, the community fears access to this treatment option – the third new PAH therapy approved by Health Canada in recent years – will be delayed due to a lengthy negotiation process through the pan-Canadian Pharmaceutical Alliance (“pCPA”). Another Health Canada-approved PAH treatment, Opsumit (macitentan), was recommended for public funding by the CDR in January 2015, yet still remains out of reach due to unsuccessful pCPA negotiations, giving patients reason to be concerned that Uptravi may follow in its path. In January 2016, Health Canada approved Uptravi for the long-term treatment of idiopathic PAH, heritable PAH, PAH associated with connective tissue disorders (including scleroderma), and PAH associated with congenital heart disease, to delay disease progression in adult patients with Functional Class II or III. In October 2016, the CDR recommended that Uptravi be publicly funded for patients

8 | Scleroderma

whose disease is not being adequately controlled with a first- and second-line therapy. The hope is that publicly-funded access to Uptravi will be successfully negotiated through pCPA, but physicians,

“patients have high hopes for Uptravi as a new treatment option to slow the progression of this rare but very complex and serious lung disease.”

patients and caregivers are concerned that any delay will impact the prognosis of those who require this treatment option. “PAH patients have high hopes for

Canada – National News WINTER 2016/2017

Uptravi as a new treatment option to slow the progression of this rare but very complex and serious lung disease that significantly limits life expectancy,” says Maureen Worron-Sauvé, Vice President of Advocacy, Scleroderma Canada. “Our fear is that if we are faced with another lengthy negotiation process, as with other PAH drugs, patients will be denied access to a treatment option that may be urgently needed by some, and seen as a last resort by others.” It must be noted that in Quebec, the Institut national d’excellence en santé et services sociaux (“INESSS”) in October recommended against listing Uptravi on the drug formulary used by the Regie de l’assurance maladie du Quebec. This had caused great concern for the Fondation de l’hypertension arterielle pulmonaire – Quebec and Scleroderma Quebec. “We were sorely disappointed to learn of this decision, which we know will deprive patients of a potential treatment to battle against PAH,” says Denis Cormier, President of Fondation HTAPQ. “All patients should be entitled to effective treatments that have clearly demonstrated their therapeutic value and have been approved by Health Canada.”

PATIENT

ADVOCACY To date, none of the recently approved treatments for PAH are accessible to patients in Canada through public funding, with the exception of Opsumit, which is only publicly funded in Quebec. This delay in access to treatment restricts PAH physicians’ ability to exercise the individual clinical judgement that is essential to the optimal management and long-term health of those living with this complex disease. As the first oral prostacyclin receptor agonist, Uptravi is a new form of treatment that can address patients’ diminished quality of life and potentially slow the progression of their disease. For patients who are unable to be treated with an intravenous prostacyclin, Uptravi may be their last hope. “When I was diagnosed with PAH in 2009, I was told I only had three months to live. My initial treatment regime prescribed by my PAH specialists moderately improved my symptoms, but it wasn’t until Uptravi was added to my combination therapy that I really felt I had an effective course of treatment that controlled and reduced my PAH symptoms,” explains Joan Nemeth from Vernon, B.C. “Prior to Uptravi, I couldn’t fully get through my days and had to prioritize my activities. I couldn’t work two days in a row, or make the bed and do the vacuuming on the same day. Now, I am able to lead a more normal life, and I would hate to think what would happen to me or other PAH patients if we were deprived of this life-changing medication.” While the prognosis for PAH patients has improved somewhat in recent years, it remains poor despite currently available treatments. Many patients remain significantly ill with moderate-to-severe symptoms and progressive right-ventricular heart failure. The average survival in

adult PAH patients following diagnosis is estimated at only five to seven years, which means they do not have time to wait for the necessary treatment options to be made accessible to extend their already limited life expectancy.

PATIENTS LIVING WITH SCLERODERMA HAVE AN INCREASED RISK OF DEVELOPING Pulmonary arterial hypertension (PAH) If you have scleroderma and are experiencing some or all of these symptoms

o Breathlessness o Fainting o Fatigue o Swollen feet/abdomen o Light Headedness o Chest Pain o Blue lips & fingers PLEASE SEE YOUR DOCTOR ASK FOR AN ECHOCARDIOGRAM the primary SCREEENING FOR PAH

For more information visit www.scleroderma.ca

“It is unacceptable that PAH patients who rely on public drug funding are prevented from accessing Health Canada-approved treatments and, as such, we as PAH specialists are unable to exercise the individual clinical judgment that is essential for the optimal treatment of this serious and fatal disease,” says Dr. Sanjay Mehta, MD, FRCPC, FCCP, Director of the Southwest Ontario Pulmonary Hypertension Clinic at the London Health Sciences Center in London, Ontario, and Chair of PHA Canada. “Our community is very concerned that the trend to delay and deny public funding of the newest, most effective PAH treatments is taking treatment decisions out of the experienced hands of PAH medical experts. We strongly urge governments across Canada to immediately fund Uptravi and ensure all PAH patients have timely access to optimal therapy to improve and extend their lives.” About Pulmonary Arterial Hypertension In PAH, the arteries (blood vessels) of the lungs become narrowed by scar tissue, sometimes to the point of being completely closed.Those affected by PAH suffer from high blood pressure in the lungs, which results in strain and enlargement of the heart, which ultimately leads to heart failure and death. PAH is a common complication of scleroderma, a chronic hardening and contraction of the skin and connective tissue. PAH shares many symptoms with other diseases, which often leads to lengthy delays in diagnosis, and misdiagnosis.There is currently no cure for PAH, and if left untreated, patients live an average of only two to three years. i Please visit www.scleroderma.ca for more information, or contact Anna McCusker, Scleroderma Canada, 289-396-3039, anna@scleroderma.ca

Want to help? It’s easy! Visit www.TAKEACTIONPAH.ca for easy to use resources and more information on how you can get involved. Together, we can and will make a difference! Show your support by emailing your local and provincial government representative by using this easy-to-use tool Find us at SSCanada and show your support by liking and sharing Follow us @SclerodermaCAN and show your support by favouriting and retweeting

Scleroderma Canada – National News WINTER 2016/2017 | 9

FACTS about MEDICAL MARIJUANA Answers to some commonly asked patient questions

he conversation around medical marijuana is changing. Existing scientific evidence, ongoing research, and human stories are not only compelling, they are undeniable. Ask the stage 4 cancer patient who needs to curb nausea and manage pain… or the ALS patient who needs to stimulate appetite and alleviate muscle spasms.

For these people and countless others, medical marijuana truly changes the shape of their world. Following is an informative Q&A provided by DelShen Therapeutics Corp., which is awaiting licensure by Health Canada.

Is medical marijuana/ cannabis safe? Medical marijuana/cannabis can be a safe, effective, and natural remedy for many symptoms or illnesses. However, like any medical product, cannabis is not for everyone.

What is medical marijuana or cannabis? Medical cannabis (or medical marijuana) refers to the use of cannabis and its constituent cannabinoids, such as tetrahydrocannabinol (THC) and cannabidiol (CBD), as medical therapy to treat disease or alleviate symptoms. The cannabis plant has a history of medicinal use dating back thousands of years across many cultures.

10 | Scleroderma

There are some physical or psychological conditions that increase the risk of adverse effects when using medical cannabis. Consult with your health care practitioner before consuming cannabis products and maintain regular follow-up appointments throughout your treatment regimen.

What is pharmaceutical grade marijuana/cannabis? When a company refers to a product as “pharmaceutical grade” they are commenting on a set of standards under which their product was produced. Simply put, it means that the medical marijuana is grown and distributed under the highest quality assurance and security standard in order to meet the needs of the patients.

Canada – National News WINTER 2016/2017

What is the proper dose of medical marijuana? There has been no proper dosage scientifically established for the use of medical marijuana/cannabis, so we recommend you discuss this with your authorizing/prescribing health-care professional. In the meantime, Health Canada has published some helpful information at http:// laws.justice.gc.ca/eng/regulations/SOR2016-230/

What is ACMPR? The new Access to Cannabis for Medical Purposes Regulations (ACMPR) replace the Marihuana for Medical Purposes Regulations (MMPR). As of April 1, 2014, individuals may only access cannabis for medical purposes from licensed producers approved by Health Canada. With Health Canada rethinking medical cannabis and creating new regulations in August, 2016, the new regulations are intended to eliminate uncertainty around

a legal source of supply of cannabis; the Minister of Health has allowed, among other things, licensed producers (LP’s) to produce and sell cannabis oil and fresh marijuana buds and leaves in addition to dried marijuana, and to allow authorized users to possess and alter different forms of cannabis.

What are the guidelines around how much medical marijuana I can order? According to the regulations, you can order as much medical marijuana as your health-care professional prescribes provided the amount you possess at any given time does not exceed the 30-day amount you have been authorized to use up to a maximum of 150 grams, whichever amount is less.

Does insurance cover medical marijuana?

In Canada, medicinal marijuana is not yet covered by most drug insurance plans; however there are some exceptions – Sun Life would be an example of a large insurer where coverage has been granted. It is currently handled on a case-by-case basis. The only way to know if you will be covered is to explore it with your insurer. ( You can read the ground-breaking decision in this article: http://bit.ly/InsuranceCoverageMMJ )

Can I take my medical marijuana with me when I travel? Most countries prohibit the use of marijuana, so at this time, you cannot take your marijuana when you travel to other countries, including the United States. Check with the embassy of any country you intend to visit for the most up-to-date information. i

In addition, it may be claimed under certain cases with the WSIB (Worker Safety Insurance Board) in Ontario, as well as through Veterans Affairs, and can typically be claimed as a health deduction for personal income tax filing purposes.

Scleroderma Canada – National News WINTER 2016/2017 | 11

Celebrating

national conference Record attendance with participants from around the globe By Anna McCusker, Executive Director We are all part of a strong and growing nation-wide community dedicated to fighting scleroderma and supporting the people who live with the disease every day. Seeing that magnificent community in action is my favourite part of our National Scleroderma Conference and this year’s conference in Montréal was no exception. It was a privilege to work with our partners at Sclérodermie Québec, in particular president Gaétan Baril and executive director Diane Collard, in promoting and organizing the conference. Marie-France Philbert also deserves a special mention for doing such a wonderful job leading the volunteer team. If you were in Montréal for our 17th Annual National Scleroderma Conference, you already know that we had record attendance and attracted participants from across Canada and the United States and from as far away as Australia. Those attendees tapped into a truly powerful learning opportunity. The Continuing Medical Education (CME) stream was a big success, for which we owe Dr. Murray Baron of the Canadian Scleroderma Research Group and McGill University a tremendous

12 | Scleroderma

amount of credit. We also offered a special session for men, and continued our focus on providing insight into the most compelling and up-to-the-minute research. This research component was a real highlight, with leading investigators like Dr. Jean Luc Senécal, Dr. Maureen Mayes and Dr. Dinesh Khanna all presenting. On behalf of every conference participant, I want to thank our many sponsors along with the Scleroderma Canada Board of Directors and the leadership of our provincial partners. By supporting the National Conference with enthusiasm and energy, they have helped establish a nation-wide culture of collaboration, not just at the conference, but throughout the year as well. We should all be proud of the progress we are making together. As successful as our annual conference has been, we are making a significant change in our scheduling strategy by moving to an every-other-year timeline. That means our 18th National Scleroderma Conference will take place in Calgary, Alberta in 2018. We have already started planning, so I hope you can join us then. i

Canada – National News WINTER 2016/2017

THANK YOU to our SPONSORS lead sponsors

platinum sponsor

gold sponsor (French Translation funded by)

friends of scleroderma

Scleroderma Canada â&#x20AC;&#x201C; National News WINTER 2016/2017 | 13

THANK YOU

to our

SPEAKERS

Opening Keynote: Jean-Luc Senécal, MD

Closing Keynote: Maureen Mayes, MD, MPH

Danièle Henkel, CEO Susan Barlett, PhD, Clinical Psychologist Ghassan El-Baalbaki, PhD, Psychologist Arthur Bookman, MD FRCP Ryan Clarke, President, Advocacy Solutions Maureen Worron-Sauvé, Vice President Advocacy and Public Relations Scleroderma Canada Chad Jeudy-Hugo, Director, Cohn & Wolfe Normand Ricard, Sclérodermie Quebec Audrey Potvin, Sclérodermie Quebec Gaetan Baril, President – Sclérodermie Quebec Jean-Michel Boileau, Pharmacist Nancy Morency, Scleroderma Society of Ontario, Support Group Leader Valerie Maisonneuve, Sclérodermie Quebec Gerard Cox, MB, FRCPCI, FRCPC Vanessa Delisle, MSc Stephanie Gumuchian, BSc Psychology, MSc Psychiatry Olivia Dubois, Physical Therapist Mervyn Gornitsky, Chief Emertus, Director of Research, Professor Emeritus Marie Hudson, MD, MPh, FRCPC Lisa Jewett, MSc Dinesh Khanna, MD, MSc Barry Kurtzer, CEO, Director and Medical Director for DelShen Therapeutics Corp. Linda Kwakkenbos, PhD Maggie Larché, MBChB, MRCP(UK), PhD Ariel Masetto, MD Carys Massarella, MD, FRCPC Janet Pope, MD, MPh, FRCPC Steeve Provencher, MD, MSc, FRCPC Eric Rich, MD Shane Shapera, MD, FRCPC Brett Thombs, PhD

14 | Scleroderma

Canada – National News WINTER 2016/2017

JUNE AWARENESS 2016 Thank You CANADA YOU RAISED $357,607 S

Ju ne 5 th $ 2 2,206

Ju ne 1 9 th $ 1 1 , 5 5 7

CLE

J u ne 18 th $ 1 4 , 8 8 4

Ju ne 1 9 th $ 4 0,000 J u ne 1 8 th $ 1 4 1 , 0 0 0

VANCOUVER

J u ne 26 th $ 3 6 , 6 0 0

Ju ne 4 th $ 2 2,528 J u ne 1 1 th $ 1 5 , 6 4 0

J u ne 25 th $ 1 5 , 2 6 1

J u ne 1 8 th $ 3 6 , 6 0 0

Ju ne 1 2 th $ 2,525

Scleroderma Canada â&#x20AC;&#x201C; National News WINTER 2016/2017 | 15

JUNE AWARENESS

Get Ready for 2017

Our Goal is $500,000 You can start a Walk, Run or Ride in your community Having volunteered for the past 18 months and now having joined the Scleroderma Canada family, I would like to invite you to join me in continuing to raise funds to support the mission of Scleroderma Canada – to increase public awareness, advance patient wellness and support research through our Walk or Run in the Park for Scleroderma events. During the 2016 June Awareness month, $357,607 was raised in 9 communities across Canada and I would like to challenge you to add

your community to make 2017 a record year. This year we are planning on adding Virtual Walks. Unfortunately, walks do not occur in every city across Canada, but it is important that everyone has an opportunity to participate in a walk in some way. Anyone can take part in a virtual walk! How you choose to participate in a virtual walk is completely up to you. Be creative! Invite your family and friends to walk around your local park and have a picnic. Run or walk

a local race and use your fundraising page to collect donations to benefit scleroderma research and programs. An information package with details on how to start a walk is available along with any assistance you may require to start a walk in your community.

Let’s Walk, Run or Ride for Scleroderma! Cheers, Ruth Mullin, Events Coordinator

For details or more information Please contact Ruth at events@scleroderma.ca or by phone 1-866-279-0632 S

CLE

2016 we raised $357,607 through walks, runs and rides across Canada, let ’s make 2017 a record year. 16 | Scleroderma

Canada – National News WINTER 2016/2017

CLE

We need your help to organize an

Scleroderma Walk,Run or Ride in the Park event in your community

Be part of June Awareness month for 2017! The following walks have been tentatively confirmed for 2017.

Join the Teams! British Columbia, Smithers June 4 Park location TBA (NEW FOR 2017) Alberta - Sylvan Lake June 18 Centennial Park Playground Manitoba - Winnipeg June 25 St. Vital Park Nova Scotia - Halifax June 17 DeWolff Park Ontario - Hamilton June 24 Battlefield Museum House & Park Ontario - London June 3 Gibbons Park Ontario - Ottawa June 10 Vincent Massey Park Ontario - Toronto June 17 East Don Parkland Ontario - Toronto June 24 Budapest Park Saskatchewan - Regina June 4 South Liesure Centre

Please contact Ruth Mullin at 1-866-279-0632 or e-mail events@scleroderma.ca for information regarding planning a walk in your community.

Inaugural

Fundraising Event

THE SPIRIT OF BLUE ORGANIZING COMMITTEE NANCY MORENCY 647-298-0398 KATHRYN GAMBLE 416-706-1196 FELICIA PRONESTI 647-385-5005 ANNA MCCUSKER ED SCLERODERMA CANADA 1-866-279-0632

18 | Scleroderma

cross North America, there are 350,000 people living with a disease called scleroderma. I am one of them. I know from personal experience that scleroderma is about more than the life-changing and potentially life-threatening physical aspects of the disease. With no known cause and no cure, there’s also no clear and effective treatment path. That puts a huge burden on the patients. The situation often leads to anger, fear and despair. I know because I’ve been there. Living with this disease since 2012, I know how it feels to lose control of my life and destiny. To realize that I need help to take care of myself. To feel daily pain, to watch my body change so I feel like I don’t recognize myself, and to look ahead to a future that is not just different, but far too short. At my worst, I felt broken. Both my physical body and my spirit were wounded. I couldn’t understand how this had happened. In a matter of months, I went from being a healthy, strong woman to being unable to get out of bed and dress myself. My life as I knew it was effectively over. Endings however, don’t have to be bad. In hindsight, I can see the insights I gained through the pain, sadness and anger. I knew that I could not continue on my downward spiral. I was dying and dying painfully. My body was shutting down. That was when I made a crucial decision to try new options. My path to better health turned out to be through holistic methods. I tried so many thera-

Canada – National News WINTER 2016/2017

pies. Some helped, some didn’t. The work I put in, however, proved to me that I was committed to being healthy. It proved I was prepared to fight for my health. It proved I was prepared to fight for my life. I am not cured, but I do feel better. I feel more empowered and active in determining my own future. This is the opportunity I hope to share through Spirit of Blue. I want to inspire and give more people the tools to explore their options and find their own paths to a healthier “new normal.” The funds raised by the Spirit of Blue event on February 21, 2017 will go to support the Scleroderma Society of Canada in helping Canadian scleroderma patients understand their treatment options. We are going to make more information available on traditional medical approaches and on multiple alternative approaches so every patient has the tools to find their own best path. Please consider being part of Spirit of Blue. The event itself is going to be wonderful, with multi-platinum singer-songwriter Chantal Kreviazuk headlining the evening and a great venue at the Richmond Hill Centre for the Performing Arts. Our plan for the Spirit of Blue 2017 event in February is to start an annual tradition that helps people living with scleroderma find their best road to better health, better living and simply, more joy. This event will be moving from Central, West and East Coast of Canada every year. This is my mission. This is my passion. I hope you will consider being part of it and joining the Spirit of Blue team. With thanks,

Nancy Morency Committee Chair

Get Involved

Let’s see participation across Canada. Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. February is Rare Disease Month. On February 28, 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases. Over the last few decades, funds dedicated to rare disease research have increased. But it can’t stop there. Scleroderma Canada is getting involved with its special concert featuring multi-platinum artist Chantal Kreviazuk at Richmond Hill Centre for the Performing Arts in February. But this is just one event. We urge volunteers across the country to organize an event in your community. It doesn’t need to be a major concert, with

Save

e t a D the

an international star. It could be as simple as bringing together local talent. If you want to organize a “Spirit of Blue” event in February please tap into our experience – we are glad to help. After all, we’re all interested in a common goal – to raise money for research and a cure. We have joined 36 other countries to take this day to raise our voice. Please join the choir and have your voice heard. Contact Scleroderma Canada for more information.

info@scleroderma.ca or call toll free 1-866-279-0632

SCLERODERMA CANADA Board of Directors

Invite you to our – 2017 AGM Meeting

Halifax, Nova Scotia September 23, 2017 (Location and program will be available March 2017)

www.scleroderma.ca

20 | Scleroderma

Canada – National News WINTER 2016/2017

PERSONAL

Story

Constantly Reminded Living with a disease that has no cure Rosanne Queen Provincial President Scleroderma Association of British Columbia

very day is a personal challenge for me to overcome the physical restrictions, discomfort and pain of living with a disease that is not visible to most, known by even less and which has no known cure. I’m constantly reminded I have scleroderma because I’m always cold, my hands and feet are in “Raynaud’s mode” and my hands swell painfully with arthritis which affects most of my joints. I have limited dexterity and calcium deposits on my fingers and experience regular, severe acid reflux. Like many diseases, I’m not fine one day and sick the next. Cold hands are a regular occurrence; “cold hands – warm heart”. It was in 1992, while downhill skiing, I noticed that my thumb had gone white. Concerned about potential frost bite I consulted with my family doctor, who referred me to a specialist and after a time diagnosed me with Raynaud’s Syndrome. The condition is most obvious at the extremities, fingers and toes, but also affects other parts of the body. The news was that if it became a severe condition I could eventually lose my fingertips. Oh, great! Life continued, but downhill skiing was definitely out. Unfortunately, my hands are in Raynaud’s mode most of the time, but luckily my fingers do not develop open sores. The internal organs react to the lack of blood flow and cause a painful coldness to my core. I wear gloves indoors as well as outdoors, I have a heated vest, heat

packs for my feet, and I soak in our hot tub before going to bed to warm my core so that I can go to sleep without being chilled. Moving forward to 1997, the constant swelling of my hands and shiny thick skin lead me to consult a rheumatologist. During the visit I’m told “You have scleroderma”. Shocked and dazed, I was not sure what questions to ask and not really taking in what I was being told: “Thick skin … hardness around the organs … nothing we can do … make you comfortable … know in about five years if you’ll die… get really sick or just maintain the status quo … unfortunately there is no cure.” The news was shocking and like most people these days, my husband and I searched scleroderma on the internet. The information about the disease was scary and depressing, with no light at the end of the tunnel. I’m not one to sit back and let things happen so I took charge. This disease was not going to consume my life or control me. My husband and I sat down to discuss the future and agreed on committing to experiencing life and start on our “bucket list” rather than wait until retirement. At the top of our list was to experience travelling in different parts of the world by cycle touring on our tandem bicycle. Though I had lost strength and dexterity in my hands I still possessed the strength in my legs and the determination in my heart to fully enjoy the cycling and adventure. Since making

the decision we have taken trips from 6 to 15 weeks; experiencing the sites, history and people of Australia, Ireland, France, Denmark and locally. We hope that we can continue working on our bucket list! I have spent many years trying alternative health care options, continuing exercise programs and staying positive. Like most people with this disease, taking medication becomes a big part of our lives. I can’t imagine the quality of life I would have without them. What I can tell you is; this disease has given me (us) a wakeup call. We all need to keep healthy and participate in life. We also decided to get involved with raising awareness and money for research. In 2012 we started the “Scleroderma Ride for Research”. With the help of family and friends we have raised over $150,000 for research projects at St. Paul’s Hospital in Vancouver. Every day I am so thankful for David’s love and support; and the support of family, friends and my medical support team (family doctor, physical trainer, chiropractor, massage therapist, physiotherapist, rheumatologist, and gastroenterologist). Every day I’m reminded that I have Raynaud’s and Scleroderma. I think, however, that I have become a better person through this experience and realize just how fragile life is. i Rosanne Queen is President of the Scleroderma Association of British Columbia

Scleroderma Canada – National News WINTER 2016/2017 | 21

PERSONAL

Story

In Honour of A COOL AUNT Nephew inspired to get actively involved

y journey to the Scleroderma Society of Ontario began roughly 20 years ago when my wonderful, vibrant and loving aunt, Linda Ann Roach was diagnosed with scleroderma. Being 10 at the time, I was unable to comprehend the implications of the disease or what it might mean for Linda’s quality of life. This disease, though unknown to my family and not understood at the time of my aunt’s diagnosis, would be the eventual cause of her death. Unfortunately pulmonary fibrosis and her compromised immune system prevented her from being able to fight an infection, which eventually took her from us, while she awaited a lung transplant in 2011.The word scleroderma is hard to pronounce, though for anyone who has experienced this disease or watched a loved one battle through the symptoms and day-to-day exhaustion, it is quite clear that the disease is also very difficult to battle. It was extremely tough to watch as the disease took hold of my aunt in her later years, particularly as she was relegated to an oxygen machine for the final months of her life. To further understand my desire to join the Scleroderma Society, it would be

22 | Scleroderma

Marc Di Rosa helpful if I paint you a picture of who Linda was outside of her illness, and what she meant to our entire family. Linda was selfless; she spent 35 years working at the Ajax-Pickering Hospital as a nurse. She worked tirelessly on behalf of her patients and continued working until 2010, when the effects of scleroderma no longer permitted her to do what she loved. Her efforts were recognized by staff at the hospital and a plaque was unveiled in her honour after her death. Linda was also loving, and family was her number one priority. Having never married or raised children of her own, Linda became the “cool aunt.” She was the one who hosted all important family events, who was the life of any party, and was also someone that could be relied on for comfort or advice. The reality is that despite not having children of her

Canada – National News WINTER 2016/2017

own, she was instrumental in raising her nieces and nephews. The home that she shared with my grandmother in Ajax became everyone’s home. Whether someone needed to stay the night, have a home cooked meal, or vent about life’s hardships, the doors were always open. Linda possessed a huge heart, an open mind and a zest for life that was unmatched, even in her final days. So it is with a heavy heart and a profound sense of optimism that I join The Scleroderma Society of Ontario as a Director. My goals are to help the society raise awareness, use my skills and connections to continue the fight against scleroderma, while also honouring the memory of my late Aunt Linda and the many others who have lost the battle with scleroderma. In her 56 years of life she taught lessons, helped others, loved her family and friends and made the world a better place. In the five years since her death she has left an emptiness which has yet to be filled. Though she no longer occupies this physical space with us, she will never be forgotten in our hearts and minds. We love and miss you dearly. i

personal

stories

Trying to find quality of life

Inspired by Mom Son gets involved in her memory

By Larry Girard

oI was diagnosed with systemic scleroderma in December 2010. The difficulties for me were loss of range of motion especially in my hands (Raynaud’s) and made everything difficult to achieve from personal hygiene to even washing my hair. When you can’t open a jar or a car door it gets very frustrating. Personally I had to give up so much – running, sports and especially golf! I was an avid golfer, getting out three times a week, but I can no longer hold a golf club. My treatments for this horrible disease started with prednisone (no luck), Methotrexate (no luck), Cyclophosphamide (no luck) and had to deal with all the side effects.

Finally in 2015, I was treated with an infusion of Rituximab and had remarkable results. It was not a cure but it sure added to my quality of life. The cost of the infusion was $12,000.00 and I got it covered through Trillium. However they will not cover the recommended treatment of once a year unless my condition worsens! To maintain my progress I am being treated weekly with Methotrexate injections. I just summarized my story for the sake of reading but I will say that this is such a terrible disease and has so many other effects on my body that there are too many to name. i Larry Girard, 60, lives in Windsor, Ontario.

How one young woman finds the strength

TO FIGHT HER DISEASE

y name is Nayanashree and I am originally from India, but today Canada is my home. I am thankful that the Scleroderma Society is giving me the opportunity to share my story because it is important to promote awareness as much as possible. I was diagnosed with scleroderma at the age of 17 and two years later, I was told there is no permanent cure. It has been nine years since being diagnosed, and although I sometimes get depressed and

ask “Why with me?”, I have learned ways to deal with it, balance my work life and maintain a positive attitude. The key for me is regular follow up with my doctor, practice yoga, eat healthy and pursue my passion for dance.These give me the strength to fight my battle with scleroderma. I am also thankful for the support from my family, doctor and friends. Thanks to them and the hope for a permanent cure, allow me to have quality of life. i

By Jason Doucette

y mother, Linda, was first diagnosed with Raynaud’s phenomenon, approximately 25 years ago. Her fingers would turn blue and purple and she would often wear gloves to complete the most basic of chores, such as hanging clothes on the line or mowing the lawn. Over time, she developed ulcers on her fingers and underwent surgery to cut nerves, which provided limited relief. Living in rural Nova Scotia where these symptoms were rare and often difficult for general practitioners to treat, many trips to Halifax often took place throughout the year. She suffered severe scarring of the lungs, which eventually led to a diagnosis of Pulmonary Arterial Hypertension. Lung transplant was discussed with our family and we traveled to Toronto for Mom to undergo various tests to determine her eligibility. Unfortunately, the lung scarring progressed rapidly and she passed away before being placed on the lung transplant list. The year following my mother’s passing, I attended the Walk in the Park for Scleroderma in Halifax. After speaking with members of the Scleroderma Society of Nova Scotia, I offered my assistance to the group and the next year I chaired the Run/Walk Committee. Subsequently, I became President of the Society and work to provide support to local patients. I feel that by providing support to those living with the disease, I am honouring the struggle that my mother experienced for many years. i

Youth Ambassador tells His Story

Once on the sidelines, Sam doesn’t feel alone anymore By SAM KELLY

y name is Sam and I have never known life without scleroderma. When I was three years old I was diagnosed with rheumatoid arthritis. Not long after that I was diagnosed with scleroderma. My scleroderma means that unlike other kids my age, I can’t play hockey or any other sport. Instead of lacing up skates, I am left on the sidelines. I still love sports, but having scleroderma means I can only be a spectator, not a player. The thing about scleroderma that affects

me most is fatigue. Scraping up an ounce of energy is like dragging myself through glass. It doesn’t matter how much sleep I get I am still tired. School is a challenge to say the least. Unlike children who have visible signs of disability, I look normal but have invisible symptoms – and others doubt I am really sick. Despite these challenges, I love learning and plan to attend university. As a child with scleroderma I didn’t know anyone else like me. Then one day I was asked to be the Youth Ambassador at the 2015 Scleroderma Conference. The

conference was an eye-opening experience – there were many helpful tips for dealing with scleroderma and I met other children with the disease. I didn’t fell alone anymore. Thanks to the kind contributions by Dom Sports from the sale of these sporting goods, there are possibilities for youth with scleroderma to meet other children and discuss the challenges we have experienced and most importantly hope for a cure.i Sam Kelly is Scleroderma Canada Youth Ambassador

Scleroderma Canada – National News WINTER 2016/2017 | 23

Hang a blue ribbon on our WishingTree THANK YOU THANK YOU

THANK YOU

DONATE NOW www.scleroderma.ca or call toll free 1-866-279-0632

Your support of our small charity makes a BIG DIFFERENCE

Last year YOU helped us hang Blue Ribbons on our Wishing Tree. Your generosity helped us raise $30,000 THANK YOU

THANK YOU

We hope you will continue your support, with a gift of hanging a Blue Ribbon on our Wishing Tree.

Enclosed is my my gift of:

$200

$150

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Your gift will provide support to those living with scleroderma and will help in the research for a cure.

Other

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Signature: Scleroderma Canada (SC) is a registered charitable organization, No. BN86958 8772 RR0001. SC may retain your contact information & represent you, but it will not share your contact information with any person or organizations without your prior consent. Upon your request, your name will be removed from the SCâ&#x20AC;&#x2122;s contact list.