Archive for November, 2009

CBC News : PAH Combination Therapy Issue in Ontario

CBC News, Connect with Mark Kelley, November 27, 2009
Mark Kelley interviews PAH patient and advocate Cindy Waters and PAH specialist Dr. Sanjay Mehta to discuss the current PAH combination therapy funding issue in Ontario. Watch part one and two below.

Also read the Producer’s perspective: buying drugs.

Part One:

Part Two:

November is PH Awareness Month

Early diagnosis and treatment is crucial for rare yet deadly disease

VANCOUVER, Nov. 18, 2009/CNW - We often hear about the perils of high blood pressure, but many Canadians are unaware that high blood pressure in the lungs Рknown as pulmonary hypertension (PH) Рcan also have fatal consequences. This month, the Pulmonary Hypertension Association of Canada hopes to raise awareness about PH Рa rare but serious disease that can strike at any time and has no regard for race, age or gender.

“PH is often not recognized until it is quite advanced, and as a result, many people may have the disease without knowing it,” says Darren Bell, President, Pulmonary Hypertension Association of Canada. “Sadly, this means it is usually diagnosed at an advanced stage when survival rates are poor. We want to make sure Canadians learn more about the disease, as early diagnosis and treatment is crucial in delaying progression.”

It is estimated that between 2,000 and 5,000 Canadians have been diagnosed with PH, but as many as 10,000 may be affected by the condition(1) – the exact number is unknown because few clinical trials have been done and many people are not diagnosed at the earlier stages of the disease. Early symptoms are subtle and include unexplained shortness of breath, fatigue, swelling of the feet and ankles, and fainting. Patients with certain types of pulmonary arterial hypertension (PAH) – the most severe form of PH – only live an average of two to three years if left untreated.(2)

“PH is a complicated disease in which the arteries of the lungs become narrowed and may even close, because of scarring, resulting in high blood pressure in the lungs,” said Dr. Sanjay Mehta, Professor of Medicine and Director of the Southwest Ontario PH Clinic in London, Ontario, and Medical Director, PHA-Canada. “As PH progresses, a patient’s heart becomes enlarged and weaker, which often leads to a high risk of death.”


PH is a chronic condition for which there is no cure. However, the good news is that there are several effective treatments available, and Canadians living with PH have more options than ever before. Ongoing research is rapidly advancing our understanding of the causes of PH, and since 1997, several treatments have been approved in Canada.(3) Thanks to these advancements, many patients with PH are living longer and healthier lives.

Kathy Ilano knows firsthand the importance of early diagnosis and treatment. “I had never even heard of PH. All I knew was that I couldn’t breathe,” mentions Kathy. “It took a long time to accurately diagnose me, but I’m glad I was persistent and my doctor found out when he did, or I wouldn’t be alive today. If you think you or a loved one may have PH, be proactive and find out all the information you can so you get properly diagnosed by a specialist.”

The Pulmonary Hypertension Association of Canada provides support and information for patients and caregivers who are living with this rare disease, and is striving to create an ever-growing network of support groups and Chapters that will enable patients and family members to connect, learn from and find common understanding with others.

Canadians who are concerned about PH should be proactive about making the right choices and work closely with family, friends and healthcare providers for support as well as the most appropriate treatment option. For more information, visit


November 8, 2009 – PH Awareness Kiosk

PH Awareness Kiosk at Vaughan Mills

The Toronto Chapter will be hosting an awareness booth on Sunday, November 8, 2009 from 11:00am to 7:00pm. The kiosk is located in Small Towns Neighbourhood 4. Drop by our booth to learn about pulmonary hypertension from members of the Toronto Chapter. There will also be a raffle draw for a chance to WIN an free iPod and many more!

Date: Sunday, November 8, 2009
Location: Vaughan Mills (1 Bass Pro Mills Drive, Vaughan ON)

Awareness Kiosk at Vaughan Mills

Ombudsman investigates cut in funds for rare-disease drugs

Advocate is examining Ontario decision affecting therapy for fatal lung ailment
Jessica Leeder Tuesday, November 3, 2009 Page A9
All material copyright CTVglobemedia Publishing Inc.

Investigators working for the Ontario Ombudsman are examining a provincial funding decision that is jeopardizing the lives of patients with a rare lung disease, one of whom died over the weekend.

Bonnie Cameron was a 32-year-old single mother featured in a Saturday Globe and Mail story about patients with fatal pulmonary arterial hypertension (PAH) who have been forced by the province to give up life-sustaining multi-drug cocktails because there is not enough scientific evidence to support the treatment.

Ms. Cameron, who struggled with the disease for 10 years, was told earlier this year that her medication would be covered only if she scaled back to a single drug. When she did, her condition deteriorated rapidly. She died of right-heart failure in a Toronto hospital on Saturday night – her 32nd birthday.

A number of PAH patients in Ontario are fighting to avoid Ms. Cameron’s fate. Several received the same letter from the Ontario Ministry of Health that Ms. Cameron did, which said their PAH treatment coverage would be nullified even if they were willing to pay for secondary medication themselves.

Patients and doctors are increasingly pointing to the use of drug combinations as key to living longer – and better – with PAH. Several provinces allow combo treatment on a case by case basis.

Several Ontario patients, concerned that scaling back their drug regimens would lead to death, complained to the Ombudsman’s office after receiving the province’s ultimatum.

Read the Full Article in PDF