Ontario Government Withdraws Funding for Augmentation Therapy, Please Help Us Reverse this Decision

 

Posted: March 5, 2010

 

The Ontario Drug Benefit Formulary of the Ontario Ministry of Health and Long-term Care has ceased approving funding of alpha-1 antitrypsin augmentation therapy (Prolastin®) for newly prescribed patients. This therapy is the only treatment available for lung-involved patients with alpha-1 antitrypsin deficiency.

 

This decision is wrong on clinical, economic, and more importantly, ethical grounds.

 

Fewer than 40 Ontarians are currently receiving this therapy (some funded through private insurance). We are aware of as many as ten newly diagnosed Ontarians that have been denied funding.

 

When the Ontario Government began denying funding for newly prescribed patients we were led to believe that it was a temporary measure and that funding would be reinstated after an official review.

 

Although the Government of Ontario has yet to deliver on its intention to provide a formal process for input from patient groups into drug funding policy, as this review slowly progressed, Alpha-1 Canada took every opportunity to communicate to the Ontario Government the needs of patients. We wrote, telephoned, e-mailed and even spoke directly to government officials, approaching them at events and meetings.

 

Although a final decision has not been announced, Alpha1 Canada is concerned that the Ontario Government will not reinstate funding for new patients or for the ten or so patients currently waiting. The unconfirmed good news is that we have no reason to believe that patients currently being funded will lose that funding. It is imperative that should you learn information different from our understanding that you contact Alpha-1 Canada immediately. Information on this issue is not readily available, if you learn anything new, please let us know.

 

Background for your letter or e-mail   Alpha-1 antitrypsin deficiency is a rare condition that is often misdiagnosed as asthma or COPD. 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.   This decision is wrong on clinical, economic, and more importantly, ethical grounds. The Ontario government has provided funding for this lifesaving treatment for nearly twenty years. For sufferers of alpha-1 antitrypsin deficiency affecting the lungs, augmentation therapy (Prolastin) is the only therapy available that treats the cause, rather than the symptoms of this rare genetic disease. Patients that are denied government funding of augmentation therapy have no other treatment option and will face annual out of pocket costs close to $100,000. Augmentation therapy is approved and covered in British Columbia, Manitoba and Québec; more private payers are covering it now than even one year ago. In Germany it is covered and even Medicare and Medicaid in the US have covered it for years. These 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 move in the opposite direction. Without augmentation therapy, the only imposed choice patients will have is to wait until they qualify for a lung transplant (if a donor becomes available) which would be fully funded by the Ontario Ministry of Health and Long-term Care. Lung transplants and the associated follow-up care place a significant strain on the health care system. Patients with lung disease related to alpha-1 antitrypsin deficiency have developed their emphysema as the consequence of a genetic accident, not personal lifestyle choices. Withdrawal of previously funded and lifesaving therapy constitutes an indefensible form of discrimination on the basis of genetics. For clinical, economic, and ethical reasons the Ontario government must immediately reinstate funding for this lifesaving therapy.

Please help us to convince the Ontario Government to reinstate funding for this lifesaving therapy. We are asking any patient or family member that is affected by this decision to immediately write to Ms. Helen Stevenson, Assistant Deputy Minister and Executive Officer, Ontario Public Drug Programs Division (contact information below). Ms. Stevenson will make the ultimate decision on this funding, please help us convince her to do the right thing.

 

While all of your personalized letters will help, it is especially important that Ms. Stevenson hear from those directly involved including patients waiting for funding, patients currently receiving funding, lung-involved patients who may in the future need funding and above all patients currently receiving augmentation therapy (Prolastin), no matter who is paying for it, and doing well because of it.

 

Please send Alpha-1 Canada a copy of your letter so that we may follow-up with Ms. Stevenson.

 

If you would like to send a form letter, you can get one here.

 

If you live in Ontario and are being reimbursed by a private insurance plan for the costs of your augmentation therapy you may want to check to ensure that your benefits do not run out at sometime in the future, for example when you or your spouse retire. If the Ontario government does not reinstate funding, you will have no other option when your private benefits cease.

 

It is important to understand that although this situation is currently Ontario-specific, cost saving moves made in one province are often followed by other provinces. Furthermore, private insurance companies frequently imitate drug reimbursement policies of provincial governments. If Ms. Stevenson decides not to reinstate funding in Ontario, the domino effect could well be felt across Canada resulting in a treatment availability disaster for the national alpha-1 community.

 

To express your concerns about this move by the Government of Ontario please write to:

Ms. Helen Stevenson,

Assistant Deputy Minister and Executive Officer,

Ontario Public Drug Programs Division,

Ontario Ministry of Health and Long-term Care

Hepburn Block, 9th Floor,

80 Grosvenor Street,

Toronto, ON M7A 1R3

Helen.Stevenson@ontario.ca

We encourage you to personalize and individualize your letters. Form letters and letters only copied from documents like this do not have the same impact. Please write and please pass this information on to your caregivers, family and friends and ask them to support your endeavours to stop this disastrous decision.