Advocacy – Provincial

Ontario Government Plays Favourites with People’s Lives

December 1, 2014

If you have a rare life-threatening disease called Alpha-1 Antitrypsin Deficiency, don’t work for the Ontario Government and you don’t have private insurance the government is content to see you waste away struggling for every breath until you join other Ontarians on the lung transplant list. If, on the other hand you work for the Government of Ontario your expensive lifesaving treatment is paid for by the taxpayers.

The Ontario Liberal Government’s platform states that, “Providing high-quality health care on the basis of need, rather than the ability to pay, is a defining characteristic of Canada and a core principle of the Ontario Liberal Party. It is the most important thing a government can do to provide people with security.”

Ask Doug Cooper of Beamsville if the Ontario government is delivering on this promise. Doug was a high school teacher and as such received his lifesaving treatment, known as Alpha-1 Antitrypsin augmentation therapy, through the Halton school board. Doug retired recently and was told his treatment would no longer be covered. “I do not want to die gasping for every breath when there is treatment available but beyond the reach of ordinary citizens,” Doug says. (Read Doug Cooper’s letter to the Minister of Health)

After covering the treatment for 18 years, in a cost cutting measure, the Ontario Drug Benefit Program ceased approving funding of Alpha-1 Antitrypsin augmentation therapy for newly prescribed patients over five years ago. This therapy is the only treatment available for lung-involved patients with a rare genetic disease called Alpha-1 Antitrypsin deficiency. But they continued providing it to for people who work in the broader public sector. For example, MPPs.

Fewer than 40 Ontarians are currently receiving this therapy (some funded through private insurance). As many as 10 newly diagnosed Ontarians have been denied funding by the Ontario Drug Benefits Program. There are no doubt more today but doctors have stopped applying on behalf of their patients because they have learned the answer will be no.

“Alpha-1 Antitrypsin Deficiency is a rare condition that is often misdiagnosed as asthma or COPD. We did a survey and found that in Canada, it takes on average 9.9 years from the time symptoms appear until an accurate diagnosis is obtained. Waiting this long to find out what is wrong and then being denied treatment because you can’t afford it is a situation the Canadian healthcare system was designed to prevent, not cause,” says Jim Mundy, Executive Director of Alpha-1 Antitrypsin Deficiency Canada Inc. (Alpha-1 Canada) an Ontario-based national patient support organization.

Dr. Ken Chapman of the University of Toronto is a world renowned researcher on this and other airway diseases. In a submission to the Ontario government, Dr. Chapman said, “Decisions outside of Ontario reflect the growing body of medical evidence that augmentation therapy not only reduces the rate of lung function decline (by conventional lung function monitoring) but preserves lung tissue (as measured by the latest in x-ray technology) and reduces mortality. When more and more private and public payers are adding augmentation therapy to their lists of treatments covered it is disturbing that Ontario would ignore its own policy on the treatment of rare diseases.”

But the Ontario government, always careful to look after its own, chose to only stop funding this lifesaving treatment for the rest of us, not for themselves.

Please help us convince the Ontario government to reinstate funding for this lifesaving treatment.

Read our news release.

How you can help:

Phone, write, e-mail, Tweet or Facebook message Premier Kathleen Wynne, Minister Hoskins, the NDP health critic France Gelinas, the Conservative health critic and your local MPP.

See contact information for each below.

    Phone

  • Premier Kathleen Wynne 416-325-1941
  • Minister Hoskins 416-327-4300
  • NDP health critic France Gelinas 416-325-9203
  • Conservative health critic Christine Elliott 416-325-1331

    Write

Write to Premier Kathleen Wynne, Health Minister Hoskins, the NDP health critic France Gelinas, the Conservative health critic Christine Elliott and your local MPP. A sample letter can be found read here.

Kathleen Wynne, Premier
Legislative Building
Queen’s Park
Toronto ON M7A 1A1

Hon. Dr. Eric Hoskins, MPP (St. Paul’s)
Ministry of Health and Long-Term Care
10th Floor, Hepburn Block,
80 Grosvenor Street,
Toronto, Ontario M7A 2C4

Ms. France Gélinas, MPP
Queen’s Park
Room 186, Main Legislative Building, Queen’s Park
Toronto, Ontario M7A 1A5

Ms. Christine Elliott, MPP
Queen’s Park
Room 436, Main Legislative Building, Queen’s Park
Toronto, Ontario M7A 1A8

Your local MPP

    E-mail

   Tweet

    Facebook message

Thank you!

Ontario Government to reintroduce bill with life-threatening consequences for many vulnerable Ontarians

A story published in the Toronto Star July 22, 2014 outlines the Ontario government’s plan to re-introduce legislation to ban paid plasma donations. The bill introduced earlier this year died when an election was called. The article, which you can read on-line here, quotes a number of people representing organizations who are in favour of such a ban. However, it seems the Ontario government is only listening to the ones who support the ban and not the ones who require lifesaving treatments derived from these donations.

Former Health Minister Deb Matthews claimed that, she is “taking this strong step against paid blood donation to maintain the integrity of the voluntary blood donation system.”

“What the government is not telling Ontarians is that 80% of the blood plasma and plasma-derived products used by Canadians comes from paid donors in the United States and Europe,” says Jim Mundy, Executive Director of Alpha-1 Canada. “Canada makes no contributions to the world supply of blood plasma relying on the rest of the world to fill the demand of Canadian patients,” he said.

Alpha-1 Canada, and many other patient advocacy groups are calling on Health Minister, Deb Matthews to stop Bill 178, take a step back, investigate, consult and give this issue the obligatory attention it deserves. They say there are numerous unintended consequences which will affect many patients, including those Alpha-1 Canada represents, in not only negative but life-threatening ways.

Research has indicated that there is no significant difference in the safety of paid or non-paid sources for plasma, the issue is more accurately about whether we should pay Canadians for plasma donations. Presently, Canadian patients requiring plasma and plasma-derived products depend upon products purchased from the United States and Europe where paid donations make up the overwhelming majority of the supply. Eighty per cent of the Canadian and world supplies of plasma derived-products are manufactured in countries other than Canada from the plasma of paid donors.

“Many plasma-derived products are used in the treatment of rare disorders including Alpha-1 Antitrypsin deficiency and are already manufactured in the United States and Europe from European and American source plasma from paid donors,” Mundy said.

For example, Alpha-1 Proteinase Inhibitor is used to treat Alpha-1 Antitrypsin Deficiency a genetic deficiency which may result in life-threatening lung disease in adults and/or liver disease in people of any age; coagulation factors, essential for blood clotting, are used to treat genetic bleeding disorders and surgical bleeding including Hemophilia A and B and Von Willebrand disease; Immunoglobulins are proteins used to neutralize foreign objects such as bacteria and viruses and are used to treat primary immunodeficiencies, secondary immunodeficiencies and Chronic Idiopathic Demyelinanting Polyneurophy (CIDP) – a rare disorder of the peripheral nerves; Hyperimmune Globulins are used to treat rabies, tetanus, hepatitis, Rh negative pregnancy and in liver transplant and surgeries; and Albumin, a protein important in regulating blood volume is used in emergency and surgical medicine to treat shock, severe burns and during surgeries.

Canadian Blood Services and Héma-Québec are increasingly dependent on source plasma from the United States from paid donors for the supply of plasma-derived products and given current plans will be unlikely to provide for more than 30% of the required immunoglobin supply alone needed to meet the needs of Canadian patients through voluntary donations.

Canadian governments have a right and responsibility to regulate the donation process. Canada currently purchases 80% of its plasma and plasma-derived products from suppliers outside of the country. Purchasing product from outside the country limits Canadian governments’ ability to regulate the donation process. The banning of paid donations within our country will increase our dependence on outside sources and other governments’ regulation of the process.

There is a worldwide shortage of plasma-derived products. Canada should contribute its fair share to ensure that there is an adequate supply of plasma and plasma-derived products worldwide. This goal can only be reasonably met if we develop a responsibly regulated paid plasma contribution system in addition to the system of donated plasma collection,” Mundy stated.

Alpha-1 Canada is dedicated to providing information, education and support to Canadians affected by the rare genetic disease known as Alpha-1 Antitrypsin Deficiency (Alpha-1) and also dedicated to providing information and education to the Canadian medical community about Alpha-1. Mundy said, “We are uniquely positioned to address the issue of paid plasma donations, especially those used to manufacture plasma fractionated products. We represent many recipients of a plasma-derived product. These people have a right to be consulted and listened to by their provincial government.”

It is hypocritical to suggest that Canadians should not be paid for the time and effort involved in donating plasma because there is currently a readily available supply from other counties from donors who are paid.

Read our letter to Minister Matthews: 140409 – Bill 178 – Minister Matthews

Please write to your MPP or Minister Matthews, you can find their addresses here. We have written a letter that you can use, but it will be more effective if you add your personal thoughts and experiences to it. The letter can be accessed here:  Write to your MPP

Thank you.

Living Proof – Ontario & Alberta

“It ain’t over, ‘til it’s over.” We are almost reluctant to remind you but the battle to have government reimbursement reinstated in Ontario continues into its fifth year. To bring you up-to-date, five years ago the Ontario government stopped approving funding for new patients who were prescribed Prolastin (the only brand of augmentation therapy approved for use in Canada). They continue to renew funding for those previously approved but refuse to process new applications. In addition to a number of scientific submissions from Grifols (formerly Talecris Biotherapeutics) the manufacturer of Prolastin, Alpha-1 Canada also made a scientific submission in January 2011, which was written by Dr. Kenneth Chapman. On November 11th 2011, Remembrance Day, we made yet another submission grounded in patient outcomes. This second submission by us was based on the personal stories of dozens of Canadians from coast to coast to coast that have been fortunate enough to receive Prolastin. Without the direct participation of these members of our community this submission would not have been possible. The document takes its name from a quote from a patient in British Columbia who wrote that she, and her sister, were “Living Proof” that Prolastin therapy is effective in preserving lung function and extending life. Even though they had asked for just this sort of evidence and even though all of the patient experiences we positive, Living Proof was also rejected by the Ontario government. Even as the ink on Living Proof was still drying, the same issue flared up in Alberta. Living Proof was quickly rewritten for the Alberta situation and submitted to the Alberta government in 2011. Within three months the government of Alberta agreed to begin funding this lifesaving treatment. Alpha-1 Canada will continue to advocate for equitable and affordable access for people affected by Alpha-1 Antitrypsin Deficiency to all forms of treatment that may be prescribed or encouraged by their qualified medical practitioners in Ontario and everywhere else in Canada. We should point out that the governments of British Columbia, Manitoba, Québec and now Alberta do pay for this treatment. Unfortunately, the way these processes work in the provinces and territories a patient group like Alpha-1 Canada cannot begin the approval process. We will however, work to convince those who can begin those processes to do so and we will take an active role in ensuring those approvals. Baseball great Yogi Berra, is famous for many sayings including, “It ain’t over, ‘til it’s over.” In the fight for equitable and affordable access to treatment you can rest assured that these battles ain’t over till we say they’re over! You can read both versions of Living Proof  here: Living Proof-Ontario-November-2011 Living Proof-Alberta-December-2011

 

DISCLAIMER:This website is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this website to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder. Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.
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