sadownyk

As the Alberta Election race enters the final hours, so too does the official time in office for one of the most honourable and compassionate souls I have ever met. Once the results are announced tonight, the retirement of Heather Forsyth officially begins, bringing an end to a highly successful political career.

I met Heather a few years ago when I was struggling to find help for a little girl, Aleena Sadownyk, who needed immediate access to life-saving treatment. Because this treatment is expensive (the fourth most expensive drug in the world), we were getting nowhere with the PC government, at that time led by Premier Alison Redford. Desperate for help, I contacted Heather to see if there was anything she could do in her capacity as the Official Opposition Health Critic.

The moment I spoke with Heather, I knew I had connected with someone that would do everything in her power to help this little girl. She listened to everything I had to tell her, keyed in on the most important facts of our case, and sprang to action immediately after our initial phone call was over. I was impressed, and had Hope again for helping little Aleena.

Now, a quick aside. Over the years, I’ve had the pleasure (sometimes) of working with many politicians throughout the country. Oftentimes, these politicians offer their help during advocacy cases to further their own stature within political circles – helping with these advocacy cases usually translates into scoring political gain against the government of the day, and members of the Official Opposition jump at the chance to score such points. I’m not naive in the slightest – I understand that many politicians get involved in my advocacy pushes because of the prospect to score those sought after blows against the government. And I’ve never minded that fact – I’ll do anything to help our kids suffering from rare diseases, and if a politician wants to help out – for whatever reason – who am I to turn down the help offered, especially when we are talking life and death situations for our kids?

While I was impressed with the speed that Heather and her team sprang to action to save Aleena, I was more impressed that I felt she was doing it out of a love for helping people, and a passion for doing what’s right. Moreover, I truly felt she was working as hard as she did because of the heartache and heartbreak she felt for what Aleena and her family were dealing with. However, my close friends were skeptical – they have heard me speak often about the help I’ve received in the past and they were sure Heather took this case on for those same reasons. They were sure she was doing this for political gain and for personal ambitions within that political world. I vehemently disagreed – I consider myself a good judge of character, and I was sure that Heather was one of those rare people in the world of politics who were helping because they could, and because she felt that it was incumbent on her to make a difference in the life of this little girl if she were able.

And you know what? My first impression was right.

Shortly after Aleena had her treatment approved – solely due to the hard work of Heather and her team led by Matt Solberg – Heather shared with me that she would not be seeking re-election the next time the Province when to the polls. Win or lose, Heather didn’t have a political future she needed to worry about. Political gain didn’t play into the situation at all, though I felt that was the case all along.Aleena is doing incredibly well today – she had her life saved by one of the most caring and compassionate people I’ve ever met – ever – in the world of politics. When she looks back on a career filled with a long list of accomplishments – from serving in Cabinet to being the Leader of the Official Opposition – I know that Heather will be able to remember Aleena and the impact she had on her life as being one of the most satisfying and rewarding moments.

I’m sad to see Heather leave the world of politics. She’s one of a kind – one of the few that go into the office everyday to try and make the world a better place for those around them. She’s always been honest, truthful, kind, caring, and compassionate. And she saved the life of a little girl.

The Alberta Legislature is better for having Heather serve amongst its storied halls, and the people of Alberta are better for having her represent them for so very long. Personally, I’m a better person for knowing her, and I’m proud to call her Friend.

Godspeed, Heather Forsyth. Enjoy your retirement, it’s well deserved. Thank you for your service and your love for our kids battling rare diseases. We will be sure to send you updates on Aleena as she makes her way through school, as she gets her first job, as she walks down the aisle on her wedding day. Thank you for your kindness, for your love. We will forever be indebted to you for that, and more.

ALBERTA TODDLER AWAITING FUNDING FOR LIFE-SUSTAINING TREATMENT

St. Albert Toddler Diagnosed With Ultra-Rare Condition; Treatment Already Being Funded In Numerous Provinces

Alberta Health is currently considering an application for exceptional funding of an expensive life-sustaining treatment required by an Alberta toddler. Three year-old Aleena Sadownyk was recently diagnosed with MPS VI, and requires the life-sustaining treatment immediately in order to halt further progression of her devastating disease. Alberta Health has already denied funding for the treatment through the Alberta Rare Diseases Funding Program. They are now reviewing a second application through the Short Term Exceptional Drug Therapy (STEDT) program. While Aleena needs to begin treatment immediately, there has been no timeline set for a decision from Alberta Health.

Aleena suffers from a rare enzyme deficiency called MPS VI (also known as Maroteaux-Lamy Syndrome). Sufferers of MPS VI lack an enzyme in their blood that breaks down cellular waste in the body called glycosaminoglycan (GAG). These GAGs build up in the bones, tissues, organs, and muscles of affected individuals and lead to many devastating symptoms including heart and airway disease, corneal clouding, stiffening of the joints, shortened stature, and premature death. To date, there are 9 children suffering from the disease in Canada and roughly 1,100 worldwide.

While there is no known cure for MPS VI, a treatment does exist. Naglazyme is an Enzyme-Replacement Therapy (ERT) designed to provide patients with a synthetic version of the enzyme they are lacking by infusing small doses into the patient’s bloodstream on a weekly basis. Produced by Biomarin, the treatment for this orphan disease can range from $300,000 per year for a small individual to $1 million per year for a young adult. Due to the lack of an orphan drug policy in Canada, Naglazyme is only available to Canadian patients through the Federal Government’s Special Access Program (SAP). It is being used for patients in Ontario, British Columbia, Saskatchewan, and Quebec through the SAP and is funded by the Provincial governments respectively. Currently, Naglazyme has been approved in numerous countries worldwide, including the United States, the European Union, and Australia.

In Canada, there are numerous precedents for the life-sustaining treatment to be funded. The first approved case took place in Ontario where the parents of 9 year-old Isaac McFadyen, residents of Campbellford, Ontario, successfully lobbied the Government to fund the expensive Enzyme Replacement Therapy for him when he was diagnosed in 2006. After a very public campaign to secure funding, Isaac has been receiving his weekly infusions at The Hospital For Sick Children in Toronto for 7 years. Since then, numerous other provinces have used the precedent set by the McFadyen case and have approved the same treatment for their patients, most recently in 2012 in Saskatchewan and 2011 in Ontario.

Prior to starting treatment, Isaac suffered from severe compression of his spinal cord that required the removal of a piece of his skull and a portion of his vertebrae. In addition, Isaac endured numerous other surgeries to treat complications of the advancing disease in his body. Since beginning his weekly infusions, Isaac’s liver and spleen have reduced back down to a normal size, his rate of growth has increased, his heart function has improved, and his heart valve disease has stabilized. Furthermore, Isaac has had no further progression of his bone and joint disease, airway disease, and compression of his spinal cord.

Naturally, the Sadownyk family has been devastated by the diagnosis of their daughter, Aleena. Laura Sadownyk, Aleena’s mother, expressed her fears about the length of time the government is taking to render its decision. “It’s very agonizing to wait patiently, especially after hearing the experts in this field talk about early diagnosis and treatment being the best way to prevent the onset of a lot of the effects of this disease.”

McFadyen also notes how important it is to get children affected with MPS VI started on weekly infusions at a young age, and is also frustrated by the process put in place to review rare disease funding in the province. “We know that this treatment can slow down or even halt the disease progression in individuals so it’s very important to begin treatment as soon as possible after diagnosis. Aleena has already been approved by the Special Access Program to receive the treatment she so desperately needs. The only thing stopping her from beginning that treatment is the lack of funding by the Province.” Adds Sadownyk, “It’s heartbreaking that the fate of our daughter rests in the hands of bureaucrats.”

McFadyen believes that the time for action from the Redford government is now. “The Provincial government has the opportunity to do the right thing and ensure that Aleena receives the treatment she so desperately needs. It’s the role of government to protect and ensure fair and equitable access to Health Care for all Canadians, regardless of which Province they happen to live it. The Isaac Foundation is calling on this government to take action and save the life of this child. She can’t afford to wait.”

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For more information about this topic, or to schedule an interview to discuss, please call Andrew at 613-328-9136 or email Andrew at mcfadyena@me.com.

Attached Photo – Aleena Sadownyk, Age 3. St. Albert, AB

Godspeed, Heather. You Will Be Missed!

Alberta Toddler Awaiting Funding For Life Sustaining Treatment