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Meet the Community

Garrett Shakespeare – North Vancouver, British Columbia

Garrett Shakespeare was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) 15 years ago. Now 26, this rare and deadly disease took its toll on his body and major organs for more than half of his young life.

Once an avid hockey player, Garrett was forced to quit the sport due to the increasing risk of blood clots, and extreme fatigue and abdominal pain. He was prescribed a high dosage of steroids to manage his symptoms, but they were not effective and had countless negative side effects. Cataracts were severely affecting his field of vision, and in June 2011, he experienced a blood clot.

Garrett’s doctor prescribed Soliris, but although the treatment was approved for PNH by Health Canada in 2009, he did not have access to this “miracle drug” under British Columbia’s provincial drug plan. Like Garrett, many living with PNH were not funded through their province for treatment, and only some received Soliris through private health insurance. Without access to Soliris, Garrett knew his time was running out.

Garrett played a significant role in the fight for access to Soliris for PNH patients, as he urged the B.C. government to ensure that all PNH patients have access to Soliris through public funding. He met numerous times with his provincial government representatives, and shared his story with local and national media. On July 22, 2011, B.C. and all Canadian provinces announced that they would provide public access to Soliris for PNH patients. Days after his 23rd birthday, Garrett received his first infusion of the drug.

“A huge weight was lifted off my shoulders. I began to plan for the future again, instead of worrying about whether or not I would have a future,” Garrett recalls. “I used to experience pain all over my body, and I would be so tired and lethargic. Now I play sports a lot more often, and everything is easier,” he says of life on Soliris.

Though Garrett has experienced a remarkable transformation since beginning Soliris therapy, the transition to living well with PNH is not without its ups and downs. Garrett’s tip for other patients starting their journey on Soliris? “Remember to slow down every once in a while. After I began to feel better, I thought I could do anything, and would often push myself too hard, work too many hours, and exhaust myself,” he says. “It’s okay to take a day to rest here and there.”

Today, Garrett works as a DJ and in scheduling at his local recreation commission, and feels excited about what the future holds.

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Carrie Richards – Niagara Falls, Ontario

Carrie winterWhen Niagara Falls native Carrie Richards was 18, she was diagnosed with Aplastic Anemia. After living with crippling fatigue and enduring regular blood transfusions, she was rushed to hospital, unable to swallow foods or fluids without severe discomfort. Shortly after this 2005 episode, she was diagnosed with PNH.

Carrie began to feel the effect of the disease on her body, experiencing lower back pain, bloating, depression, indigestion, jaundice, discoloured urine and kidney infections. Her condition deteriorating, she was hospitalized numerous times and she began to realize that her body was shutting down.

When Carrie was first introduced to Soliris, the Ontario government did not fund the life-saving treatment through its public drug plan. At this time, patients without private health insurance were unable to receive the drug through public funding, and only some patients had access to the drug through private coverage. Fortunately, in November 2009, Carrie received her first infusion of Soliris through the manufacturer on a compassionate basis.

The impact of the treatment on her health was immediate and dramatic. “My health almost instantly improved before the end of my first infusion,” Carrie recalls. Despite experiencing headaches during the first few days of therapy (a common but temporary side effect of Soliris infusions), she required fewer blood transfusions over time. Her skin colour returned to a healthy, normal hue and her hemolysis disappeared. “I felt like I could do pretty much anything.”

Carrie played a key role in the fight for access to Soliris for PNH patients, as she met with her MPP several times, and shared her story with local media to spread awareness of the issue and put pressure on government decision-makers. In July 2011, provincial governments across Canada made a landmark decision to fund Soliris through their public drug programs. “Ontario announced funding for Soliris on the day before my 29th birthday – it was the best gift I could have ever imagined. I finally felt safe.”

More positive life changes came for Carrie in 2013. She gave birth to a beautiful, healthy baby girl named Ava Leigh Morgan by C-section on September 9, 2013 at McMaster University Hospital. Throughout her pregnancy, Carrie continued to receive regular infusions of Soliris at an increased dose, as well as bi-weekly blood transfusions and blood thinners as precautions. “The baby needed more blood than I could provide on my own,” Carrie says.

Though Carrie’s pregnancy was successful, it didn’t come without its challenges. Carrie recalls her pregnancy taking a toll mentally and physically, but a positive attitude helped her manage the condition while pregnant. “Try to keep your head up and know that it gets better.” She also credits her partner and family members for their steadfast support.

Now a proud mother, and enjoying a fulfilling career as a social worker, Carrie has returned to the regular dose of Soliris and her health is back on track. “I’m feeling better than I have in a decade.” Carrie’s advice to others living with PNH? “Enjoy life and count your blessings daily. Take notice of the world around you, spend your time with positive people, ignore negativity and cherish every day.”

She describes her future in one word: optimistic. We wish you a happy and healthy future with your family, Carrie!

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Michele King – Red Deer, Alberta

Michele KingMichele King of Red Deer, Alberta was diagnosed with the ultra-rare, progressive and fatal blood disease known as paroxysmal nocturnal haemoglobinuria (PNH) in 1990. Over time, Michele began to see and feel her body deteriorate and her quality of life diminish. She lived with a constant fear of developing a deadly blood clot.

After living with PNH for over 15 years, Michele joined a clinical trial for a new therapy called Soliris, a life-saving treatment for PNH that was approved by Health Canada in 2009. At the time, Michele was one of the lucky few PNH patients to receive funding for the drug through private insurance, but most patients in Canada did not have access to Soliris, either through private insurance or through their provincial drug plans.

When Michele first began treatment with Soliris, her condition improved with her first infusion.  “I never had stomach pain or esophageal spasms ever again,” she says. “The pain went away.”  Though Michele had access to treatment, she constantly feared that her coverage would end at any time – and without public funding, she would have had no safety net.

When all provinces except for Quebec announced that they would provide public access to Soliris for PNH patients in July 2011, Michele was ecstatic. Her partner’s insurance benefits had just recently been cut off, so the deal came at a perfect time.

Today, Michele has never felt better, and has regained her strength and energy. As a result, she is able to work full-time and participate in the same activities that a normal, healthy adult would. Michele rides her horse at least four times a week, and competed in – and won – her first horse show in June 2012.

When Michele’s health was deteriorating, her family and friends were extremely understanding of her condition. “They were fabulous and understood what I was going through when I didn’t feel well.”  As Michele adjusted to life on treatment, she had to accept the twice-monthly infusions as part of her routine. “I remember how I felt before the drug, accept it, and move on.”

Michele played an important role in urging the Alberta government to ensure that all PNH patients in the province had access to Soliris. She met with her MLA and shared her story with local media. Michele is discouraged that there are still some patients in Canada who are without access to Soliris. “I believe anyone who needs access to the drug should get it,” she says. “It can make you a productive, healthy member of society that can contribute positively to a community.”

Michele feels excited about what her future holds. “I do anything I want to, now that I live pain-free.”

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Tracy Murray – Vancouver, British Columbia

Tracy MurrayIn March of 2013, Vancouver’s Tracy Murray began to experience severe fatigue, nausea, and abdominal pain and swelling. Concerned about these symptoms, she went to numerous walk-in clinics and was sent for blood tests to find out what was wrong. By the end of May 2013, Tracy went to the hospital and was immediately admitted to the emergency room, and doctors released fluids from her stomach through a pump to ease her pain. Over the following days, she underwent a series of tests, x-rays and scans, and doctors discovered a blood clot in her liver and rushed Tracy to Vancouver General Hospital.

Tracy was diagnosed with Budd-Chiari syndrome, a complication that many PNH patients experience. In Budd-Chiari, blockages occur in the hepatic veins, which drain the liver. Tracy was put on warfarin (a blood thinner) and had a stint surgically inserted into her hepatic vein to prevent additional clots from forming. Shortly after this episode, and after undergoing numerous tests, Tracy received her diagnosis of PNH (paroxysmal nocturnal hemoglobinuria), which explained her recent health issues.

By July 2013 – only two weeks after returning home from the hospital – Tracy was readmitted to hospital with another severe clot and swelling. She underwent a second operation to widen the stint in her hepatic vein.

Thanks to private medical coverage through her employer, Tracy was able to begin treatment with Soliris, the life-saving medication proven to return patients’ lives and health to normal. Tracy received her first life-changing infusion on August 4, 2013 – and hasn’t looked back.

Now married to a loving, supportive husband and working as a travel agent, she says her energy levels have quadrupled. She no longer experiences the extreme exhaustion or the constant worry that a blood clot could instantly end her life. “I can finally function again,” she says. Because of the amount of damage and the number of surgeries her body endured, she admits that her recovery has taken longer than is common. “I certainly consider myself lucky, but it did take me a while to get ‘normal.’”

Today, Tracy is able to enjoy a fulfilling personal and professional life, and loves to educate others about PNH and serve as a role model to other patients. While she needs one more surgery to address a hernia, she does worry about her ability to access Soliris in the future.

Tracy continues to receive Soliris through private insurance through her employer, but she knows that this coverage may not last forever. “I worry about what might happen to me if my employment or funding situation were to change,” she says, “I hope that I won’t ever have to face losing access to this life-saving medication.”

Like all PNH patients in Canada, Tracy needs the assurance that the B.C. government will make this treatment accessible to her should she ever require it through public funding. “While Soliris is available through government funding, if the time comes, I need to be sure that I would seamlessly transition to accessing the treatment through this means.”

Tracy is grateful for the funding support B.C. Pharmacare has provided to PNH patients since Soliris first became accessible in July, 2011. She is calling on the province to maintain its commitment to PNH patients so that no one is left with the stress or anxiety that accompanies any uncertainty around accessing this transformative treatment.

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