At the time, he had no choice but to live with the symptoms of haemolysis (the destruction of red blood cells) including blood in his urine, shortness of breath and extreme fatigue, and the fear of developing a life-threatening blood clot. His kidneys became impaired due to continued haemolysis, and he nearly experienced kidney failure. The only treatment available to Mark was steroids, which also took their toll on his body without improving his symptoms. He knew that scientific studies show that without treatment, approximately one‐third of PNH patients do not survive more than five years and about half die within 10 years from the time of diagnosis.

After living with PNH for over seven years, Mark was approved for compassionate funding through the manufacturer for a new therapy called Soliris, a life-saving but costly treatment for PNH, in November 2009. Within days of his first treatment, his painful symptoms were alleviated and his blood levels stabilized.

Prior to the provinces’ agreement in July 2011 to provide public funding for Soliris to PNH patients, Mark was one of the lucky few to receive funding for the treatment, as most PNH patients did not have access to it – either through private insurance or through their provincial drug plans. Though he received the treatment at the time, Mark feared that his coverage would end without warning, and since the New Brunswick government didn’t fund Soliris, he would have no safety net.

Mark played a significant role in the fight for access to Soliris for PNH patients, as he urged the New Brunswick government to ensure that all PNH patients have access to Soliris through public funding.

Mark shares his story in the articles below:

Telegraph-Journal (New Brunswick): May 23, 2011
The Daily Gleaner (Fredericton): May 23, 2011

Donna experienced numerous health complications, including blood clots – one of which led to a stroke a year after she was diagnosed.  She has also been living with Crohn’s Disease, a form of inflammatory bowel disease affecting the intestines, since she was 25.

For over a year, Donna has been receiving infusions of Soliris, a life-saving treatment for PNH. The treatment prevents her red blood cells from being destroyed by haemolysis, a  symptom of the disease. She feels that Soliris is saving her life, and she no longer lives in fear of developing a deadly blood clot, or experiencing another stroke as a result.

In January of 2011, Donna’s private health insurance carrier and her husband’s were involved in a dispute over who should cover the cost of her treatment. Since the Ontario  government does not cover the cost of Soliris for patients, Donna’s life hung in the balance. Thankfully, her husband’s carrier agreed to continue to provide treatment, and in July 2011, provincial governments announced their decision to provide public funding for Soliris for all PNH patients. She continues to live well with the benefits of Soliris each day.

Donna and her husband Chris have been active advocates for public access to Soliris for all PNH patients in Canada, and played a key role in urging the Ontario government to ensure that all PNH patients have access to this treatment.

Donna shares her story with the media below:

Hamilton Spectator: March 25, 2011
CHCH Hamilton: April 7, 2011
Hamilton Spectator: August 3, 2011

Toronto Star: “They’ve put a price on a human life” – November 20, 2010
Toronto Star: “‘Time is of the essence’ for victims of rare blood disorder” – November 22, 2010
Guelph Mercury: “Patients denied life-saving drugs” – November 20, 2010
Toronto Star: “‘We’re at a crossroads’” – November 23, 2010
Guelph Mercury: “Province urged to act quickly to save man’s life” – November 23, 2010
Toronto Star: “Dying man gets $500,000 medication” – November 24, 2010
Guelph Mercury: “Maciesza family maintains bedside vigil” – November 24, 2010
Toronto Star: “Drug access must be fixed, Premier says” – November 25, 2010
Guelph Mercury: “Maciesza faces agonizing wait over expensive drug funding decision” – November 25, 2010
Guelph Mercury: “Premier addresses drug access disparity” – November 25, 2010
Globe and Mail: “Is the high price of drugs for rare diseases justified?” – November 26, 2010
Toronto Star: “How much is too much?” – November 29, 2010
Guelph Mercury: “Costly medicine working wonders for Guelph-area man” – November 30, 2010
Guelph Mercury: “Family pleads for lifesaving medicine” – December 7, 2010
Waterloo Region Record: “Family makes plea for son’s lifesaving drug” – December 7, 2010
Guelph Mercury: “Maciesza tests our belief in health-care system” – December 8, 2010
Niagara Falls Review: “‘I was living like I was dying’” – December 10, 2010
North Bay Nugget: “Woman champions funding for rare disorder” – December 11, 2010
North Bay Nugget: “Health care needs dose of compassion” – December 15, 2010
24 Hours Montreal: “Son assureur refuse de payer” – December 23, 2010
Le Journal de Montreal: “Son assureur refuse de payer” -  December 23, 2010
Calgary Sun:”Life-saving drug out of reach” – December 24, 2010
Toronto Star: “Kept in limbo over life-saving drug” – December 26, 2010
Waterloo Region Record: “Find a way to save this life” – December 28, 2010
Guelph Mercury: “Find a way to fund this cure” – December 29, 2010
Guelph Mercury: “2010 in review, part two” – December 29, 2010
Waterloo Region Record: “Province should pay for this man’s drugs” – December 30, 2010
Waterloo Region Record: “Drugs out of reach” – January 4, 2011
Guelph Mercury: “Man’s family buoyed by premier’s letter” – January 7, 2011
Le Trait d’Union: “Atteinte d’une maladie dégénérative” – January 15, 2011
Toronto Star: “Ontario expands coverage for drugs” – January 22, 2011
Guelph Mercury: “Mount Forest man’s expensive drugs will be paid for by province” – January 22, 2011
Waterloo Region Record: “Drug coverage expands” – January 22, 2011
La Revue Terrebonne: “Dans l’attente d’un miracle” – January 12, 2011
Toronto Star: “Find a home for pricey ‘orphan drugs’” – January 28, 2011
Le Soleil: “Atteinte d’une maladie rare” – February 1, 2011
Guelph Mercury: “Extension of drug coverage was the right thing to do” – February 3, 2011
Wellington Advertiser: February 4, 2011
Guelph Mercury: “Family grateful for life-saving drug” – February 9, 2011
Info-Dimanche: “Une maladie rare et un médicament hors de prix” – February 9, 2011
La Revue (Terrebonne): “Gisele Sauriol obtient son miracle” – March 2, 2011
Le Trait d’Union: “Gisele Sauriol a enfin acces a un traitement” – March 5, 2011
Journal de Montréal: “Atteinte d’une rare maladie du sang” – February 28, 2011
Journal de Québec: “Atteinte d’une rare maladie du sang” – February 28, 2011
Guelph Mercury: “Maciesza taps social media to find care for rare disorder” – March 4, 2011
North Bay Nugget: “Waiting for treatment” – March 7, 2011
Edmonton Journal: “Blood disease patients seek funding for drug” – March 8, 2011
Ottawa Citizen: “Victims of blood disease plead for help” – March 8, 2011
Regina Leader-Post: “Funds sought for blood-disease drug” – March 8, 2011
Hosptital News: “Patients with rare blood disease turn to social media to add many voices to their few” – March 2011
New Brunswick Telegraph-Journal: “Victims of deadly blood disease seek funding for cure” – March 11, 2011
Wellington Advertiser: “Maciesza joins demonstration, lobbies for life-saving drug” – March 12, 2011
Niagara Falls Review: “Fighting for coverage” – March 14, 2011
London Free Press: “Life-saving drug not funded” March 14, 2011
Hamilton Spectator: “Lifeblood found in costly cure” – March 25, 2011
North Shore News: “Drug cost likely a death sentence” – April 8, 2011
North Shore News: “You said it” – April 10, 2011
Edmonton Examiner: “The ‘right’ coverage” – April 13, 2011
Calgary Sun: “Life-saving drug’s price tag ‘astronomical’” – April 17, 2011
Edmonton Sun: A”Pricey drug a lifesaver” – April 18, 2011
Fort McMurray Today: “Man with rare disease wants government to cover treatment costs” – April 19, 2011
24 Heures Montréal: Maladie rare du sang: l’efficacité du Soliris de nouveau prouvée” – April 21, 2011
24 Hours Edmonton: “Victim’s drugs bloody expensive” – April 18, 2011
High River Times: “Patient lobbying government to approve expensive treatment” – April 26, 2011
Lloydminster Meridian Booster: “Pricey drug a real lifesaver: Alberta” – April 27, 2011
North Bay Nugget: “Prescription petition – North Bay woman wants those with rare disease to get drug” – May 21, 2011
New Brunswick Telegraph-Journal: “Sufferer in drug-plan limbo awaiting province’s decision” – May 23, 2011
Fredericton Daily Gleaner: “Port city man says New Brunswickers need financial aid” – May 23, 2011
New Brunswick Telegraph-Journal: “Co-operate or decline” – May 25, 2011
Maclean’s: “The case for a national drug plan” – June 13, 2011
Toronto Star: “Drug deal promises to save lives, cash” – July 23, 2011
Edmonton Journal: “Aid on the way for rare blood disease sufferers” - July 24, 2011
Edmonton Journal: “Drug-funding agreement gives rare disease patients new hope” – July 26, 2011
Nanaimo Daily News: “Expensive blood disorder drug will be funded” – July 26, 2011
Vancouver Province: “World’s costliest drug provides new lease on life” – July 26, 2011
The Daily Gleaner (Fredericton): July 26, 2011
Guelph Mercury: July 26, 2011
Waterloo Region Record: July 26, 2011
Alaska Highway News: July 26, 2011
Kamloops Daily News: July 26, 2011
Alberni Valley Times: “Premiers agree to fund ultra-expensive drug” - July 27, 2011
Niagara Falls Review: “Costly medicine proves priceless” - July 30, 2011
Welland Tribune: July 30, 2011
North Shore News: “Premiers agree to fund expensive life-saving drug” – July 31, 2011
Hamilton Spectator:  August 3, 2011
Mount Forest Confederage: August 4, 2011
North Bay Nugget: “Life-saving drug OK’d” – August 10, 2011
High River Times: “Government drug deal will saves lives says High River woman” – August 12, 2011
Maclean’s: “Premiers’ ‘life-saving’ pact” – August 15, 2011

CTV/CKCO News Kitchener:  November 20, 2010 (available here)
A-Channel News London:  November 22, 2010 (available here)
AM 980 News/CFPL-AM: November 24, 2010
CTV/CKCO News Kitchener:  November 24, 2010 (available here)
A-Channel News London: November 24, 2010 (available here)
CTV/CKCO News Kitchener: December 3, 2010 (available here)
TVA ARGENT LCN Le Matin:  December 23, 2010
CJAD NewsTalk Radio 800 AM Montreal: December 23, 2010
TVRM: January 17, 18, 19, 20 and 22, 2010
A-Channel News London:   January 22, 2011
CKIA 88,3 (Quebec city):  January 25^th, 2011
CIEL FM 103,7 (Rivière-du-Loup): February 2 and 3, 2011
CTV Toronto: March 7, 2011 (available here)
CIMT TVA  (Rivière-du-Loup): February 15, 2011
VOX TV “Mise à jour”  (Rivière-du-Loup): February 23, 2011
CHCH Hamilton: April 7, 2011 (available here)
CTV Vancouver: April 9, 2011
CBC Radio CBU-AM British Columbia: April 10, 2011 (available here)
CKNW AM 980 News (Vancouver): “In Focus” segment on April 11, 2011
CKNW AM 980 News (Vancouver): “In Focus” segment on April 12, 2011
CKNW AM 980 News (Vancouver): “In Focus” segment on April 13, 2011 (available here)
CKNW AM 980 News (Vancouver): April 15, 2011 (available here)
CKNW AM 980 News (Vancouver): April 18, 2011
CBC Radio “Radio Active” (Edmonton): April 18, 2011 (available here)
CBC Radio “Here and Now” (Toronto):  April 25, 2011 (available here)
CBC Television Toronto: April 25, 2011 (available here)
CBC Television Windsor: April 25, 2011 (available here)
CHSJ-FM Country 94.1: May 1, 2011
CKNW AM 980 News (Vancouver): “In Focus” segment on May 9, 2011 (available here)
CKNW AM 980 News (Vancouver): “In Focus” segment on May 10, 2011 (available here)
CTV Calgary:  May 31, 2011 (available here)
CTV Southwestern Ontario: July 23, 2011 (available here)
Global TV BC: July 24, 2011 (available here)
CKNW AM 980: July 25, 2011 (available here)
98.5 FM Montreal: August 2, 2011

Thestar.com: “Dying patients ask: Where are the $1 billion in drug savings?” – November 19, 2010
Healthzone (The Toronto Star): “Dying patients ask: Where are the $1 billion in drug savings?” – November 19, 2010
Singtao: November 20, 2010
CTV Southwestern Ontario: “Wellington County man will die without help from gov’t, says family” – November 21, 2010
Thestar.com: “8 Ontario patients in need of $500,000 a year drug therapy” – November 21, 2010
Digital Journal: “Life, death hangs in balance for Ontarians with blood disease” – November 22, 2010
A-Channel News London: “Patient Says Province Won’t Cover Costs of Medicine”
Toronto Star: “Patients with rare disorder take fight to Queen’s Park” – November 22, 2010
Parent Central (Toronto Star): “Patients with rare disorder take fight to Queen’s Park” – November 22, 2010
Georgetown, ON: “Life-or-death situation prompts urgent questions”
Digital Journal: “PNH patient Barry Katsof discusses the need for drug Soliris” – November 23, 2010
Toronto Star: “Dying man gets $500,000 life-saving drug” – November 23, 2010
Moneyville (Toronto Star): “Dying man gets $500,000 life-saving drug” – November 23, 2010
570 News: “Area man denied life-saving drug” – November 24, 2010
French Tribune: “26-Year Old Suffering from PNH Receives Miracle Drug for a New Lease of Life” – November 24, 2010
AM 980: “Dying Man Gets Life Saving Drug From LHSC” – November 24, 2010
FM 96: “Dying Man Gets Life Saving Drug From LHSC” – November 24, 2010
1049 The Beach: “Family feels betrayed by government” – November 25, 2010
Bayshore Broadcasting: “Family feels betrayed by government” – November 25, 2010
Moneyville (Toronto Star): “Differing access to life-saving drugs has to stop: McGuinty” – November 25, 2010
Top News: “Ontario Premier Voices Commitment to Fixing Inequities in Drug Availability” – November 25, 2010
Toronto Star: “Differing access to life-saving drugs has to stop: McGuinty” – November 25, 2010
A-Channel News London: “Hospital Will Provide Costly Medicine for Cancer Patient”
Globe and Mail: “Is the high price of drugs for rare diseases justified?” – November 25, 2010
Wellington Advertiser: “Mount Forest man finally gets needed drug (for now) after political uproar”
Top News: “The Drug that Costs a Fortune” – November 26, 2010
Wellington Advertiser: “Province dithers as expensive drug improves Mount Forest man’s health”
Wellington Advertiser: “Backroom executioners”
CTV Southwestern Ontario: ”Time running out for Maciesza’s treatment” – December 3, 2010
Canadian Health Reference Guide: “New study results reinforce efficacy of only available treatment for PNH patients” – December 8, 2010
Niagara Falls Review: “I was living like I was dying” – December 10, 2010
North Bay Nugget: “Woman champions funding for rare disorder” – December 11, 2010
Cnews.Canoe.ca: “Woman with rare disease faces $500K in drug costs” – December 22, 2010
Wellington Advertiser: “Medication working as family kept waiting by provincial inaction says Arnott”
The Toronto Star: “Dying man’s access to life-saving drug soon ends” – December 25, 2010
Health Zone (Toronto Star): “Dying man’s access to life-saving drug soon ends” – December 25, 2010
Cornwall Free News: “How much is a life worth? Are High Drug Costs Justifiable?” – January 3, 2011
Healthzone.ca (Toronto Star): “Ontario expands coverage for compassionate drug access” – January 21, 2011
Toronto Star: “Find a home for pricey ‘orphan drugs’” – January 27, 2011
Ted Arnott: “Government of Ontario finally improves access to life-saving medications” – January 28, 2011
Wellington Advertiser: “A group of bandits”
Wellington Advertiser: “Government to provide six months worth of life saving treatments”
Guelph Mercury: “Maciesza taps into social media advocacy campaign launched over care for rare illness” – March 4, 2011
Digital Journal: “Lives still at risk as Ontario delays access to treatment for rare blood disorder” – March 7, 2011
CTV.ca: “Expensive medication” – March 7, 2011
News.Singtao.ca: March 8, 2011
Dushi Toronto: March 8, 2011
Hospital News: “Patients with rare blood disease turn to social media to add many voices to their few” – March 2011
The Epoch Times: “Patients Seek Funding for Life-Threatening Blood Disease” – March 10, 2011
Welland Tribune: “Falls woman urges province to cover treatment” – March 14, 2011
Niagara Falls Review: “Falls woman urges province to cover treatment” – March 14, 2011
Wellington Advertiser: “Maciesza joins demonstration, lobbies for life saving drug”
Hamilton Spectator: “Lifeblood found in costly cure” – March 24, 2011
CHCH Hamilton: “Blood disorder binds two strangers” – April 7, 2011
Delta Optimist: “Drug cost to treat North Van man’s deadly blood disorder a likely death sentence” – April 9, 2011
Burnaby Now: “Drug cost to treat North Van man’s deadly blood disorder a likely death sentence” – April 9, 2011
Richmond News: “Drug cost to treat North Van man’s deadly blood disorder a likely death sentence” – April 9, 2011
Maple Ridge Times: “Drug cost to treat North Van man’s deadly blood disorder a likely death sentence” – April 9, 2011
CBC Ottawa: “North Vancouver man denied life-saving drug” – April 10, 2011
CBC British Columbia: “North Vancouver man denied life-saving drug” – April 10, 2011
Canadian Health Reference Guide: “Study to be published in Blood Journal reinforces efficacy of only available PNH treatment” – April 11, 2011
North Shore News: “Drug cost a likely death sentence” – April 13, 2011
The Vancouver Province: “Drug cost to treat North Van man’s deadly blood disorder a likely death sentence” – April 13, 2011
Canada.com: “You Said It” – April 13, 2011
Abbotsford Times: “Drug cost a likely death sentence” – April 13, 2011
Chilliwack Times: “Drug cost a likely death sentence” – April 13, 2011
The Surrey Now: “Drug cost a likely death sentence” – April 13, 2011
Langley Advance: “Drug cost a likely death sentence” – April 13, 2011
Edmonton Examiner: “Local man battling rare disease fights for public access to live saving treatment” – April 13, 2011
CKNW AM 980: “Philip talks about Garrett Shakespeare’s health crisis” – April 13, 2011
Calgary Sun: “Life-saving drug’s cost astronomical” – April 16, 2011
Toronto Sun: “Man fights to make life-saving drug more accessible” – April 16, 2011
Edmonton Sun: “Man suffering rare disease wants government to cover treatment costs” – April 16, 2011
Kingston Whig-Standard: “Man fights to make life-saving drug more accessible” – April 16, 2011
Canoe.ca: “Man fights to make life-saving drug more accessible” – April 16, 2011
Vancouver 24 Hours: “Man fights to make life-saving drug more accessible” – April 16, 2011
Winnipeg Sun: “Man fights to make life-saving drug more accessible” – April 16, 2011
London Free Press: “Man fights to make life-saving drug more accessible” – April 16, 2011
Ottawa Sun: “Man fights to make life-saving drug more accessible” – April 16, 2011
CBC.ca – Radio Active: “Seeking Funding for PNH” – April 18, 2011
CBC.ca: “Blood disorder patient pushes for drug funding” – April 25, 2011
High River Times: “Patient lobbying government to approve expensive treatment” – April 26, 2011
CKNW AM 980: “Philip Till talks about the lack of funding for Garrett Shakespeare’s medication and the funding for Insite” – May 10, 2011
CTV Calgary: “Cured by a costly drug” – June 1, 2011
Yahoo Canada Finance: “Quebec PNH Patient Association extremely disappointed by INESSS’ position on only life-saving treatment” – June 3, 2011
Maclean’s: ”The case for a national drug plan” – June 8, 2011
Healthzone.ca: “Premiers reach deal on bulk-buying of expensive drug” – July 22, 2011
Toronto Star: “Premiers reach deal on bulk-buying of expensive drug” – July 22, 2011
Canada.com: “Support announced for rare blood disease sufferers” – July 23, 2011
Vancouver Sun: “Support announced for rare blood disease sufferers” – July 23, 2011
Ottawa Citizen: “Support announced for rare blood disease sufferers” – July 23, 2011
Calgary Herald: “Support announced for rare blood disease sufferers” – July 23, 2011
Edmonton Journal: “Support announced for rare blood disease sufferers” – July 23, 2011
Sing Tao News: July 23, 2011
Global BC: “Life saving medicine” – July 24, 2011
CTV Southwestern Ontario: “Mount Forest man wins funding battle for life-saving drug” – July 24, 2011
CTV Edmonton: “Mount Forest man wins funding battle for life-saving drug” – July 24, 2011
Guelph Mercury: “Guelph family celebrates news surrounding public coverage of costly drug regimen” – July 25, 2011
Waterloo Region Record: “Guelph family celebrates news surrounding public coverage of costly drug regimen” – July 25, 2011
Wellington Advertiser: “Provinces agree to fund expensive life saving drug; Maciesza pleased”
CKNW AM 980: “Good news for Garrett Shakespeare and PNH patients across Canada” – July 25, 2011
The Vancouver Province: “Most expensive drug in the world reverses death sentence for North Vancouver man” – July 25, 2011
The Vancouver Sun: “Premiers agree to fund ultra-expensive drug for rare condition” – July 25, 2011
The Ottawa Citizen: “Premiers agree to fund ultra-expensive drug for rare condition” – July 25, 2011
Daily Gleaner (Fredericton): Ultra-expensive treatment for rare condition gets funding” – July 26, 2011
Telegraph Journal: “Ultra-expensive treatment for rare condition gets funding” – July 26, 2011
The Edmonton Journal: “Drug-funding agreement gives rare disease patients new hope” – July 26, 2011
Nanaimo Daily News: ‘Expensive blood disorder drug will be funded” – July 26, 2011
Alberni Valley Times: “Premiers agree to fund ultra-expensive drug” – July 27, 2011
CKNW AM 980: “Premiers agree to fund Shakespeare’s “Miracle Cure”” – July 27, 2011
Niagara Falls Review: “Falls native welcomes funding for treatment of rare blood disease” – July 31, 2011
Welland Tribune: “Funding OK’d for life-saving treatments” – July 31, 2011
St. Catharine’s Standard: “Niagara native welcomes funding for treatment of rare blood disease” – July 31, 2011
North Shore News: “Premiers agree to fund expensive life-saving drug” – August 2, 2011
Hamilton Spectator: “Government funds life-saving treatment for rare blood disorder” – August 3, 2011
Mount Forest Confederate: “Life-saving drug to be covered” – August 4, 2011
Maclean’s: “Premiers’ ‘life-saving’ pact” – August 9, 2011
High River Times: “Government drug deal will save lives says High River woman” – August 12, 2011