Group wants to see an end to case by case drug funding fights

Canadian Organization for Rare Disorders pushing framework to handle rare conditions

A Canadian health organization is calling for an end to the often tragic public fights over drug funding for those with rare cases.

Just this week two cases were in the spotlight once again.

A Milton mom died after fighting to get funding for a cancer drug that would extend her life and a 12 year-old girl from west of Newmarket urged Queen's Park to help her pay for a life saving drug to fight a rare form of cystic fibrosis.

The Canadian Organization for Rare Disorders has developed (and is now fine-tuning) a framework for how the country should handle these cases and will soon be pushing our governments to adopt it.

The organization wants to see consistency across the health care system when it comes to drug funding, instead of decisions made on a case by case basis.

President of CORD Durhane Wong-Rieger says it often seems like a lot to pay hundreds of thousands of dollars for drugs to treat rare conditions, but if the costs are absorbed across the health care system it's very affordable.

"These one-off cases and each appeal that comes up and trying to give an answer individually is not working. It's not good for the patients," she tells Newstalk 1010. "It's not good for the system. We need a strategy that's going to cover everybody."

Wong-Rieger wants our system to eventually cover every drug prescribed by doctors and says although the drugs are expensive the cost represents only about 1 percent of the public drug budget, because the cases are rare.

A strategy like the one CORD is pushing would help people like Brampton's Michael Eygenraam. He has a rare autoimmune disorder and has been prescribed a drug that could get his condition under control, but it's expensive and not covered.

Like Wong-Rieger he thinks the system could absorb the cost

"We could make it work. When you look at the cost per person in Canada, when you make it a public program, it's very little."

Among other things CORD is calling for more communication across the health care system to make resources available for those suffering from rare diseases, imagining a day when your family doctor would be able to put you in touch with experts from across the country.

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  1. Me posted on 05/02/2014 02:50 PM
    It's about time!
    It always amazes me that our government always happily send monies to causes in other countries; relief, help etc, but Canadians in their own country have to beg, literally, for some help!?
    Why can't our own "backyard be cleaned first", before someone else?
  2. G Man posted on 05/02/2014 03:23 PM
    Sounds good in theory, but I'd want to see the numbers before I'd agree it's worthwhile. Some of these drugs cost tens of thousands of dollars a month, and provide little benefit. I suspect the actual cost would be very high and the money could be used more effectively elsewhere.
    1. Me posted on 05/02/2014 07:16 PM
      @G Man " I suspect the actual cost would be very high and the money could be used more effectively elsewhere."
      I will address the last of your sentence; To me, It sounds like the money will determine who can live, and who should die. The euthanasia is illegal in Canada, so why be concern about the "more effectiveness of elsewhere"?
      Also, I think that if those "special" drugs are denied to those who suffer form rare diseases, how will anyone know if they actually work or not, if there is no record of the drug effectiveness?
      We cannot rely on rats or mice studies, since those are entirely different species and have terrible short life span. (I abhor the idea of testing animals for human diseases).

      to Frank...
      I am totally with you on your thoughts except, well...let me put it this way: the pharmaceutical companies in all of the North America, discredit any naturopath/ homeopath treatments.
      Germany for example have over 60 + years legitimate data on herbs ( In Germany, about 600 - 700 plant based medicines are available and are prescribed by some 70% of German physicians!) but do you think I can obtain true OREGANO oil in north America? No way!!!
      I can buy it in Europe. The TRUE Oregano plant ONLY grows wild in Mediterranean region. Everything else grown in North America as a "Oregano" is a fake!.
      So, good luck (so to speak), it]s just as unreal, as like trying to buy unpasteurized milk!
    2. G Man posted on 05/08/2014 09:04 AM
      @Me In most cases, we're talking about drugs which cost tens of thousands of dollars per month and may extend life for 2-3 months but are not a cure. Also, we're not talking about testing drugs on patients; we're talking about drugs which have already been tested and approved, i.e., they've been shown to work in some patients under specific conditions. Drugs that are being tested are often available to patients participating in clinical trials for free.
  3. lynne posted on 05/02/2014 04:26 PM
    but we're already broke in Ontario, where's the money tree?
  4. frank posted on 05/02/2014 05:43 PM
    If Ontario wants to save money on drugs, so it can afford rare ones, it needs to follwo the lead of savvy private medical plans which cover supplement-prescribe naturpathic preventionists. Isn't it time we headed off disease? Naturopaths lead the way and they do not prescribe medications gov. must pay for.

    Ontario needs to move the medical lobby and its failed programs aside and let naturopaths in. Let each specialty do what it does best. Medicine can treat what naturopathy can't prevent.
  5. Suz58 posted on 05/09/2014 10:02 AM
    There is no reason that I can see that the pharmaceutical companies should deny proper meds to a person in need.

    Ever wonder how Doctors in private practice make extra income?
    Kickbacks for prescribing certain drugs! So much per patient who they mention to get to quit smoking. Did you ever wonder why there may be a "flavour of the month" when it comes to what doctors prescribe to patients?
    Now the government has legalized grow ops for medical marijuana. A natural substance with little or no side effects controlling epileptic seizures, sleeping, cancer patients and the list goes on. Here we go, the government is allowing these. How much tax?
    It is high time that the government stood behind their "health care". Doctors have limits on what tests they can provide for patients, x-rays, MRIs, blood tests, ultrasound and again, this list goes on. Not all but too many are just in it for the $$$, Pharmaceutical companies included.
    I would much rather see money given to someone needing it for a life altering medication, than spending $25,000 on condoms with specific logos on them.

    How do you feel about this?
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