Archive for April, 2012

Pennies for PH

Wondering what to do with all of your pennies in light of the Finance Minister’s recent announcement of eliminating the penny? Why not donate them to a great cause! “Pennies for PH” has raised funds in the past in both New Brunswick and British Columbia but we would like to see this fundraising initiative spread across the Country! Challenge your friends, family or co-workers to bring in their “Pennies for PH” – you will be surprised at how quickly they add up! This is a great and extremely easy way to fundraise for your workplace, your child’s school, your church or social group.

We are asking you all for your help in raising awareness of Pulmonary Hypertension, a rare and deadly lung disease, as well as some funds along the way. We are hoping you can speak to your employers, or for those of you who work from home, if you could place a penny jar out to collect pennies for PH. All the funds could then be sent or applied as a donation to PHA Canada. It’s easy and only requires a little of your time to get started.

Once you have collected the pennies please contact us by writing on the wall of this Facebook Page and we will be sure to collect them. We will keep you updated of when our penny collection will end, we will continue until the government has eliminated the penny out of our Canadian currency.

Please spread the message by sharing this event or inviting your friends to this Facebook Page

With many thanks from the patients and caregivers of PH.

Canadian health policy and rare disease pt 1: PH

By Navneet | 18 April 2012

On a snowy February morning, Helen Britt swings open the festively painted door of her suburban bungalow home calling on her guest to park closer and step carefully.

Her gentle smile and cheery blue green eyes at first mask the clear plastic tubing lining her nose and upper lip. Under a soft light gently lining the furrows of her aged skin, Helen tells of the day those long omnipresent tubes became a permanent part of her life “The doctor looked at me and my lips were so blue, he said you have to go to emergency right away […] and from then on I have been on oxygen”

This harrowing day came more than a year after Helen first noticed she was losing energy and experiencing increased shortness of breath. Helen was diagnosed with asthma, when her symptoms worsened Helen returned to her respirologist and was immediately written off  “She said “You’re just not fit!””

Helen had always worked out, exercising on a treadmill, golfing and curling; nevertheless she took the respirologist’s advice and intensified her workouts.

At the emergency room, Helen was diagnosed with mild pneumonia and sent home with an oxygen tank, when her oxygen levels failed to return to normal after a month, her respirologist ordered a battery of tests which finally lead to the diagnosis of pulmonary hypertension.

Pulmonary hypertension occurs when tiny blood vessels in the lungs constrict, causing blood pressure in the pulmonary artery to rise; the right side of the heart in forced to work harder to oxygenate blood.

According to the US National Library of Health, pulmonary hypertension especially in its early stages can take months to diagnose because the symptoms mimic many common disorders such as asthma. Early symptoms of PH include:

shortness of breath upon exertion
racing heartbeat

Ruth Dolan co-director of the Toronto chapter of The Canadian Pulmonary Hypertension Association recalls her young daughter’s ordeal “She started getting short of breath when she was 9 years old whenever she would run and play with her friends, or even when we went for walks in the evening. She would lag behind trying to catch her breath”
Ruth Dolan’s daughter would be properly diagnosed more than a decade later, by then her condition deteriorated significantly.

The only means to definitively diagnose pulmonary hypertension is an invasive test, which is typically done under conscious sedation called cardiac catherization; this involves stringing a long lube through an artery in the arm, neck, or groin to the heart to measure pressure in the pulmonary artery.

The rarity of pulmonary hypertension means patients not only faced delayed diagnosis because of lack of awareness regarding their condition, but bureaucratic denial of effective treatment. Treatment of pulmonary hypertension often requires more than one drug to dilate blood vessels in the lungs (flolan, revatio).

In 2009 the Ontario government stopped funding combination therapy, restricting PH patients to only one vasodilator; the justification given for this decision was inadequate sample size in clinical trials showing combination therapy to be more effective than use of a single drug. Most PH families could not afford the vasodilators alone; the cost of intravenous flolan for one patient is about $100,000 annually and the cost of revatio is nearly $20,000.

Dolan says that after the Canadian Pulmonary Hypertension Association engaged in a lengthy arduous battle with Queen’s Park the Ontario Government revised the decision and now funds combination therapy under its Exceptional Access Program.