Give Canadian Pulmonary Hypertension Patients Access to Life-Prolonging Treatments
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In 2013, I received the devastating diagnosis of pulmonary hypertension. At the age of 25 I was told I had 5 years to live (10 if I was lucky) and was sent home with supplementary oxygen. I soon learned that pulmonary hypertension is progressive, incurable and fatal. It is also a rare disease, meaning treatment options are both limited and expensive.
Pulmonary Hypertension is a rare and life-threatening blood vessel disorder that affects the lungs and heart. The pressures in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises above normal levels, and may become life threatening. The high pressures in the pulmonary artery can cause the right side of the heart to become enlarged, which can cause right sided heart failure.
Some of the symptoms of PH include: passing out, chest pain, high heart rate, unusual shortness of breath (like going on a flight of stairs, or bending over,) swelling in the belly and or ankles, fatigue, and blueish lips and/fingers.
Unfortunately, many Canadians with pulmonary hypertension are denied treatment options and access to newly FDA approved medication simply because of cost. With a disease as serious as pulmonary hypertension, patients cannot afford to wait for better treatment options to become available and accessible to everyone.
Health Canada approved a newer oral medication for PAH, macitentan (Opsumit). However, it is not available to most Canadian PAH patients, as per the decision the majority of the Provinces (besides Quebec) to deny public funding for the medication. As a result, Opsumit is available to few Canadians as many could not afford to pay for it out of pocket, and are unable to work due to their condition.
The newest treatment for pulmonary hypertension is called selexipag (or Uptravi,) which received Health Canada's approval in January, 2016. Despite being approved over 8 months ago, it is still not available to the public market in Canada. Uptravi is currently undergoing assessment, meaning there is the potential that this treatment will not be available to Canadians as well.
All 13 Provinces and Territories have been working together as a collective in an attempt to achieve greater value for both brand name and generic drugs for publicly funded drug programs. This initiative is collectively referred to the pan-Canadian Pharmaceutical Alliance (pCPA). Although the decision makers for approving these life prolonging medications can vary from Province to Province, pCPA plays a very important role in negotiating the prices of medications. One of the main goals of the pCPA is to help Canadian's gain more access to medications.
Opsumit is only available to the private market (those with private insurance plans) to all Provinces expect for Quebec. Uptravi has not been made available for public funding in Canada. Medications like Tyvaso, Ventavis, and Orenitram are also not available in Canada. All of these medications are available in the United States. Several of these treatments that have never been introduced introduced in Canada because drug manufactures know the limitations set in place for treatments wouldn't allow their medications to be available to Canadian pulmonary hypertension patients.
Several of these medications have been proven to be effective, and are less invasive option to treprostinil IV medications that must be administered 24/7. There is both an oral version called Orenitram, and an inhaled version called Tyvaso (which has been available for years) in the US.
Uptravi is an oral prostacyclin receptor agonist. It has been shown to both delay the progression of pulmonary hypertension, and reduce the risk of hospitalization for pulmonary hypertension. Unfortunately, this medication has only been available to the private market meaning patients with pulmonary hypertension have limited access to this medication. As I mentioned earlier, it is very difficult to work when you have pulmonary hypertension because of the symptoms and disability the disease can cause. I had to retire last year, and lost all of my insurance coverage. Many other Canadians with pulmonary hypertension are in the same situation.
Every time that a Province or Territory rejects public funding to a pulmonary hypertension treatment, they are putting my life in danger. They are denying me, and all the other Canadians, a chance of staying stable longer. They are denying me the potential my future could hold on a new medication that has been shown to be effective. A chance of living longer. A chance of staying off less invasive medications longer, such as Caripul, which requires patients to mix their own medicine, and wear a rather large device that pumps medication 24 hours a day, 7 days a week, directly to the heart. This method of receiving medication takes away ones ability to go swimming, showering and bathing with ease, and runs the risk of serious infections as the central line goes directly into the heart. It also causes debilitating side effects.
When our Provinces and Territories continue to reject public funding to treatment options for pulmonary hypertension they are sending the message that the lives of Canadians with pulmonary hypertension don't matter, or deserve access to newer treatments that have been shown to be promising. Many people with pulmonary hypertension remain seriously ill and limited in their everyday life.
The progression of pulmonary hypertension takes about 7-10 years to take someones life. (Unfortunately this process can be much quicker for some patients.) If newer medications are available, why do we not have access to them? Are we supposed to accept this kind of neglect? Does it sounds like pulmonary hypertension patients are doing okay with what we have available? No. It isn't enough, and organizations like the pCPA should be working harder on our behalf to help give pulmonary hypertension patients access to life prolonging treatments.
Please help me get life prolonging treatment options before its too late!
Please sign the petition to let Canada, the pCPA and the Honourable Prime Minister Justin Trudeau know that you cannot put a price limit on the lives of patients living with pulmonary hypertension in Canada. Newer medications are available, and we deserve access to medications like Uptravi and Opsumit, along with the several other newer and less invasive options that are available to patients in the United States such as Orenitram and inhaled PH treatments.
Let's show PM Justin Trudeau and Canada that the limited access to new medications available to Canadian patients with pulmonary hypertension is not acceptable. Please sign and share this petition to help me get access to newer life-prolonging treatment options.
Please note that as an Ontario resident, I will also be sending this petition to the Premier of Ontatrio Kathleen Wynne and my local MPP, Catherine Fife.
Many people with pulmonary hypertension need your support quick, as we do not have time to waste when starting new medications before the disease progresses.
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