The history of Campaign for Coverage, began in PEI

masthead-PEI2 Yes, this website was originally used in the Maritime provinces of Canada, during a time period when the public was facing a funding resistance from government, regarding multiple sclerosis treatments.

As a background to this, perhaps you remember a time when there was a theory that opening veins in the neck would improve circulation in the brain, and help people recover from MS. It was a controversial subject, and governments didn’t want to pay for such treatments until they were proved to be beneficial. People campaigned. People got news coverage. People tried influencing their politicians, and so on.

During this time, I was, and still am, a radiologist in Alberta. I was aware of all of this pressure on goverments, even in my own province, to fund this. But because I knew the anatomy of the brain and neck better than most, I thought it was a bunch of garbage, and so I was personally of the opinion, to wait for published evidence from properly powered clinical trials, to prove whether it actually worked or not.

So, that was an example of an issue, M.S. treatments, where governments faced pressure to fund something, and their delay was justified.

Dr. Halls

Cancer Chemotherpy funding

On the other hand, there are MANY examples, and I have personal knowledge of them, in cancer treatment, where an effective but very expensive drug comes into use. At first, it’s use is limited to very small groups of eligible patients, but as the drug proves effective and cures people who were otherwise uncurable, more and more patients want to be treated with it too, and govermnents resist. Their budget wasn’t built for the massive expenses of new cancer treatment drugs.

Herceptin for breast cancer treatment is an excellent example. During my years as a radiologist in the Cross Cancer Institute, I recall small groups receiving Herceptin, and other groups of breast cancer patients being SO UPSET that they were not allowed to receive it too. Naturally, they did their public outcrys, their media appearances, their secret meetings with ministers of health, provincial MLAs, and so on. Those WERE effective gradually. And the drug Herceptin was worth it. It has been an amazing benefit to patients with breast cancer.

This is something that happens over and over. New drug, new reason to campaign to get drug coverage extended to pay for it.

Sometimes I’ve been a passive bystander observing this. Other times, I’ve been a fairly quiet member of committees that discuss these things. I never have been in a position of power to make these decisions though. I’ve never been a Finance Minister or Minister of Health, and they are the one’s who ultimately make such decisions. But when you are sitting on a committee, discussing the problem of patient wanting a drug, that isn’t affordable in the current budget, the tension is there, between compassion for one group, and your thoughts about other groups of patients, who also need the budget spent on their treatments. It becomes a judgement call, and I hate to say it, but I’ve seen some people make the decision swayed by which group of patients is going to be less bothersome politically. I hate seeing that.

Well anyway, I guess I’m saying, history repeats. If you are reading this because you are investigating how to campaign for a medical treatment coverage, these take-away points. Do it. DO CAMPAIGN. Your doctors aren’t going to do it for you.

Doctors have to pick their battles, and only wage one every few years, otherwise they get branded as trouble-makers, and their careers are ruined. Hospital Administrators are middle-level only, and they are going to say no. But you have to lobby them, get angry with them, write critical letters to them, and send copies to their political and administrative bosses. Do that for sure.

Hospital Administrators, aren’t going to really help. But they will pretend to help, and say comforting things, and use delay tactics. Yes, go after them, but realize that the real decision makers are the politicians. Politicians judge what actions to take, by their re-election prospects, by how much good or bad publicity is in the news media. That’s where to take the fight.

Talking Moose

Below, I’m changing topic. When I first got this website, I asked for some content to be written for it by a freelance writer. What they wrote below, is very crappy, the next 3 paragraphs. I put it into blockquotes. I hate writing like this.

“Quick Recovery” is a concept which any person looks forward to anytime his/her body is in ill health. This simple concept entails recuperating from the attacking illness in the short time possible with minimal utilization of medical costs involved even and with no other body complications so that the person may carry on with his/her daily activities and schedule normally.

Sadly though, there are some illnesses where by health providers and clinician pronounce that they are incurable but can be managed. Of course the costs of management are hefty; you will agree that if a condition is incurable, then its management entails a lifetime commitment.

Something which is not affordable by everybody and thus poses enormous challenges, pressures, financial burden and threats of discontinue with one’s normal activities.

Gretchen Gretchen
Something is odd with this site?


David David
It was about catastrophic disease drug coverage.


Betty Betty
Now it’s more about cancer and multiple sclerosis.


Dr. Halls Dr. Halls
That’s right. I’m the new owner. Someone let this just expire, so I bought it.


Hector Hector
Why?



 
 


Dr. Halls


“Well, principle is important”, that diseases like cancer and multiple sclerosis sometimes have rare variants or atypical presentations, and the cost of drugs is devastating to the families, if government health agencies refuse to pay for it. I have a personal interest in-, and websites on the topics of…


So I thought this campaignforcoverage.ca website would be worth preserving. Chances are good, that sometime in my future years, I’ll be needing to campaign again, and when that time comes, having this website will become useful again.


Here’s more of the junk written by a freelance writer, when I asked them to get this website alive, by writing about some medical conditions that sometimes need campaigns for drug coverage. It’s crap writing.

Some conditions such as Multiple Sclerosis and MS plaques and other body paralyzing conditions of the Central Nervous System (CNS) such as Alzheimer’s disease, Parkinson’s disease, Epilepsy, and Stroke as well as other illnesses such as Lupus, Sjogren’s syndrome, Fibromyalgia, Lyme disease, Myasthenia, Sarcoidosis, etc, which may be costly to treat and manage because the costs of medication might not be affordable and the duration of management might be lengthy or a lifetime thus posing financial hardships to even patients who might have an insurance cover.

During such instances, the patients will need support from family, friends or well-wishers to finance the treatment expenses.

Some patients may opt to go for Complementary and Alternative Medicine (CAM) especially in cases whereby the condition they are so much seeking treatment of is incurable and only costly management seems the only solution offered by conventional medicine. This also implies the use of additional costs which will also strain such a patient.

The government might be tasked in alleviating the pain and financial strain such individuals undergo because it’s their constitutional right to access quality health care and medication at affordable costs, but that’s not always how things go especially with the numerous bureaucratic government worldwide.

And certainly it was not a smooth sail for the previous owners of this website too in their fight for affordable treatment and medication for some serious diseases like Multiple Sclerosis.


catastrophic drug coverage

Provincial health care plans in Canada are all in a bind, because costs of pharmaceuticals are rising far faster than their revenues or inflation.

This website was formerly used for New Brunswick and Prince Edward Islanders to campaign for coverage in provincial budgets. Now this site is re-developing into a general white paper on the balance of individual and societal perspectives. More to be added in the future.


Here’s more, written by a non-physician, about some multiple sclerosis, but I seriously have to find time to edit this. I had asked for some background writings about mainstream and alternative treatments for multiple sclerosis, and this is what came back.

Currently the website is being rebuilt and will feature content about management of Multiple Sclerosis, Ms Plaques and other related diseases of the Central Nervous System as well as diseases which result due to the autoimmune nature of the body, such as lupus or Sjogren’s syndrome.