HD-IL2 Treatment Denial in Ontario

Yesterday’s Globe and Mail cover story told a similar story of a patient being denied treatment and then waging a legal battle against OHIP. The patient’s family won reimbursement of all costs, estimated to be at $200,000. Click here for the story.

So where does this leave us with the battle to get patients access to HD-IL2 (again) in Ontario?

Certainly there’s hope that a legal battle could be won. However, in the Globe story, the patient’s family cashed in their life savings, found a lawyer (who took the case pro bono), and then two years later, they find out that they’ll be reimbursed.

What would you do?

Imagine the scenario:

— You are young and find out you have metastatic kidney cancer. Your oncologist who specializes in kidney cancer tells you that you are an ideal candidate for HD-IL2 treatment, a rigorous treatment, but one that would provide you with your only chance of a complete cure for the disease. Ontario typically sends a small number of patients each year to Buffalo for this specialized treatment. Patients living near Ottawa have typically been sent to Montreal (whether they would still be covered in Montreal is currently unclear…)

— Your doctor files your application. You receive a letter back saying that Ontario has just decided not to fund these treatments any longer in Buffalo as they have done for years.

You could pay upfront, but there is no guarantee whatsoever that your case would prove successful and that you would ever be reimbursed. You could take another treatment now and hope that IL-2 will be funded again later — but there’s a catch. If you take a drug such as Sutent first, the risks of IL-2 are proven to be much higher. Medical research indicates that if you are going to try the IL-2 route, you need to take it as your FIRST treatment.

You could go to your MPP (done). You could file an appeal (done). You could have your oncologist appeal the decision on your behalf (done). You could keep up the pressure, but how long do wage this fight before you:

a) re-mortgage your home, cash in your savings and start fundraisers (you’ll need between $200,000-$300,000) for this one-time treatment.
b) take another treatment option, knowing that you’ve likely given up your only chance of a cure

What would you do?

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2 thoughts on “HD-IL2 Treatment Denial in Ontario

  1. this is devastating news for us Ontarians. I’ll be contacting my MPP and the Ontario Minister of Health, etc to lodge my complaints. Is KCC planning on doing a sample letter regarding this issue?

    1. Hi Karen,
      A sample letter is a good idea. For now we have been playing this out day by day. In the meantime, you can use any of the
      content I posted here for letter content. We are speaking with oncologists daily to gather their support. Anyone visiting their
      oncologist in the next few weeks could perhaps bring this issue up with them and make sure they know the treatment is now
      being denied. Even those rcc oncologists who don’t routinely prescribe HD-IL2 treatment are upset that the treatment is being
      denied for those patients who would be ideal candidates. No one wants to see mrcc treatments taken away — we have few as
      it is!
      Deb

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