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Friday, 21 November 2014

Differences Between Family and Support Group

Today I went to a conference called Health Quality Transformation 2014. It's great to take part in this kind of learning experience, and this is the biggest conference I have ever attended. 

There were 13 break out sessions held in the morning and afternoon and all attendees were able to chose two. Luckily for all they will be appearing on the website of Health Quality Ontario in the next few weeks. If I deduct time for the two I attended that will give me 12 hours of video to watch. It's a sign of real openness. We were also given a copy of the yearly report on how our health system is performing.

Three of us who were patients got together at the end and came up with two ideas. One was suggesting that a patient be added to the planning committee. None of us knew whether this had happened this year but it never hurts to suggest, and we had all felt confident because of our positive reception at this year's event.

The other suggestion we would want to embed with them was that the social support area that many patients experience positively should be explored. We attended the more patient oriented sessions and that seemed to be a topic that did not come up. I was in one that mentioned self-management as an important area in a pilot project in the north, but it was not mentioned specifically.

We have all seen how valuable it can be to have support and advice from peers and others who have similar problems. Of course family and friends play a part, but you just can't replace the helpful advice you get from others who have had similar experiences.

This is a "real" support group, not a virtual one of the type that I mean to depict

Here are some words from Julie that illustrate the difference.
She saw this advice on WebMD.com as part of an article.

They advised: "Explain what RA is like. Giving people the basics on RA is just the first part. More important, explain what it's like for you. You may look the same as always, so people may have no idea what you're going through. Be specific. Describe what morning stiffness feels like. Talk about daily fatigue. Really try to get across how it affects you -- what it feels like when you do certain tasks or what is really hard to do."

She has a large and supportive family and here's her opinion about this advice.
"Do you really think that your family would sit down and listen to you describing how RA feels and remember what you said and be able to identify with your problems?  I don't!  The members on this RA support group do understand and listen because they are going through the same thing.

Even though my family is fully aware of the fact that I have RA and are very helpful and kind to me, I don't think they would want me to recite everything about "how it feels" to them.
Most people think if you Look Okay - then you are Okay.

What do you think?"

Myself, I think Julie has a way with words and I always enjoy her comments. She has also been a big help as I work towards doing a post every day for a whole month. This is now Day 20, so I am 2/3 of the way there.  Yay!




Thursday, 20 November 2014

Human Tissue for Research

Over lunch at the Arthritis Alliance Conference I sat down with a friend and we found that our table companions were scientists who work with human tissue in their lab. They were actually the first "real" scientists I have met in person. All of the other researchers I know do work on eHealth ethics, psychosocial adjustment to chronic disease, or trials to determine effects and efficacy of various types of drugs.

With determined and nosey questioning we found out that there are some obstacles involved in the smooth flow of their work. They use human tissue and with all so many regulations it is not easy to obtain it easily to use in laboratory research. The two of us immediately volunteered to help them with donations because they can use tissue that is removed in joint replacement or joint surgery.

I have two joint surgeries in my future because of problems with my knuckles and with my foot, and it turns out my surgery will be in a hospital where they have a connection. This is not really a good solution for them though. They took great pains to tell me and Marilyn that they are restricted from actively soliciting tissue donations for their research.

Being proactive the two of us had a number of ideas involving supporters tweeting about their dilemma, or having passive websites where people could volunteer if they wanted to help. Really, the only thing I would worry about in donating would be the very slim chance that a discovery that I helped with would be patented and sold for a huge cost to enrich a few.

This whole discussion really hit home with me when three of the speakers after lunch talked about using tissue for their amazing and in some cases breakthrough discoveries.

The first speaker was Sir Marc Feldman whose talk was titled "Beyond anti-TNF Therapy for Rheumatoid Arthritis".  He said "To study human disease we need human tissue" and commented on ways that monitoring human immune response might help to reduce infection risk.  


I'm sure you would rather see Sir Marc Feldman and Sir Ravinder Maini, the discoverers of anti-TNF drugs, than a sample of what is named in the title of the post

Then we heard from Dr. Lawrence Steinman on The Road Not Taken where he talked about how human biomarkers can thin down the crowd and make therapy more successful. He does not want to use a "big axe" on autoimmune disease.

Dr. Aled Edwards then gave us insights about what is slowing research down. He says the system does not encourage innovation and he got a big laugh when he said "Scientists like to fondle their problems". He talked about a partnership where ten pharma companies contributed $8 million each to produce molecules which were given to interested researchers to stimulate discoveries. They profile them in assays based on human tissues. "Human tissues seem to be the key".

It would be helpful if we could bring the issue of tissue donation into the public eye, since I am sure many of us would be willing to help with research, even in such a basic way as this.


Wednesday, 19 November 2014

Different in Canada? We Like To Think So

Today at the Best Medicines Coalition Conference I learned a lot more about private drug plan insurance in Canada. Suzanne Lepage spoke on the topic Private Market: Special Issues. Through her company, Suzanne Lepage Consulting she provides private health plan strategies. In the past she has worked for both pharma and insurance companies. I have heard a lot about medication issues from my friends in the US and naively thought that things were different in Canada.

Here we have 5 main types of drug plans, though for people over 65 only about 25% have private drug plans and most of them have various types of limits. One fact many of us did not know is that if you are terminated from a group insurance plan, for instance through job loss, you have 30 days to get what is called a conversion policy privately. That is an advantage because there is no medical exam.

Suzanne told us about trends in private insurance plans and some of them are worrying for patients. The voice of the patient is important with insurers and plan sponsors and if they don't hear from patients they imagine that everything they are doing is fine. 

One trend is the increase in Preferred Provider Pharmacy Networks - this means that if you work for CP Rail or Canada Post for example you must get your drugs through a specific pharmacy provider by mail. This deprives you of regular contact with the pharmacist in your drug store.

Another is the rise of case managers for drug claims. In this case the relationship is no longer the traditional doctor/patient that we are used to. There is a 3rd party involved - the insurance company case manager. They might well have a conflict as they are working to save the insurance company and the employer money, so may override your doctor's treatment plan or force you to try various other drugs before you can get approval for the one your doctor originally prescribed. Insurance companies suggest that this type of management may save the plan sponsors 25%. We saw from Denis Morrice a great example of just how many forms the doctors are required to fill out for approval of drugs.


Denis Morrice demonstrated the complexity and size of insurance company forms that Drs must fill out. They are different for each company!

Another two trends deal with mandatory generic pricing where you and your doctor must provide medical evidence for you to receive a brand name drug, or therapeutic substitution which was yesterday's blog topic. In at least one province pharmacists are paid an incentive to succeed in 'counselling' the patient to change to a cheaper drug.

A disturbing trend for people with chronic disease who are on specialty (expensive) drugs is that these drugs are targeted. One way this occurs involves "enhanced government integration" where you have to explore every avenue of getting reimbursement for drugs from the government. This is creating bottlenecks that slow down the whole approval process, and of course while you wait for the government to notify you, the insurance companies say "It's not our fault" you can't get the drug yet.

These are not the only issues that we see or will be seeing in Canada. If you are in a union bargaining for benefits, or you have a small business and are looking for a drug plan, or if you have a plan yourself, it's a good idea to look at the restrictions and requirements. Are you trying to look after your employees or is your bottom line the deciding factor? What would you want for yourself?

These are the reasons that we need a public plan for drug and pharmacy benefits.  I suggest that everyone look into this and make wise choices.




Tuesday, 18 November 2014

Therapeutic Substitution. Sounds Good, Is It?

Today at the 2014 Best Medicines Coalition Conference I heard about an interesting study outlining the effects of a healthcare policy change by the British Columbia government in 2003. The PharmaCare program implemented a drug reimbursement policy called Therapeutic Substitution, where all patients with acid-related diseases (mostly GERD) were required to make a medically unnecessary switch from their Proton Pump Inhibitor medication to the cheapest brand name PPI.

That brand was Pariet,which had negotiated a good price for their new drug with PharmaCare based on promised volume of users.

With therapeutic substitution patients are forced to switch from one brand of drug to a different chemical in the same class. Rob Oliphant who was in attendance called this "bureaucratic substitution". At the time he wrote an Op Ed piece for a newspaper stating, among other things, that a decision like this needs public input and that medical guidelines should be built through consensus and with expert input.

This is an interesting idea that looks very attractive to governments which are trying to save money. I hope we don't see it come back as a new light bulb idea idea.

And the results of this money-saving scheme? It took an FOI (freedom of information) request and two years waiting for the de-identified health record information before we saw this study in 2009 titled "Increased health costs from mandated Therapeutic Substitution of proton pump inhibitors in British Columbia"

Healthcare spending for drug expenses, extra physician services and additional hospital services was 43.51 million dollars Canadian. This does not include the pain, inconvenience and suffering of the patients who bore the brunt of this policy.

This is Gail Attara's slide from today's presentation. If you look at the study link earlier in the blog you will see she is a co-author. It took a huge amount of work and determination by her to obtain and analyze the data. This study is now used by Johns Hopkins and others to illustrate possible health consequences caused by arbitrary decisions intended to save money.

Sunday, 16 November 2014

Long-term Arthritis Limits Her Lifestyle

My lovely friend Julie was kind enough to detail some of the ways that having rheumatoid arthritis complicates her life. This is not the most optimistic post ever seen here, but I have to agree that it makes things less fun when you have to plan every detail in advance as if you are a one person army. Here are some of her experiences. Go Julie!

Several years ago, I came down with a very bad upper respiratory illness that turned into pneumonia.  The doctor did a chest x-ray and they found a nodule.  Of course, everyone was afraid that it was a cancer.  I was sent to a pulmonary specialist (probably one of the best doctors that I have ever been to see).  His office told me to bring EVERY chest x-ray that I could find - any that I had ever had.

From looking at the previous x-rays that weren't very good, he thought he saw a small spot on one of the previous x-rays.  He said he was very suspicious that it might be a rheumatoid nodule.  I had more x-rays, a CAT scan and a Pet scan.  From all of the testing, he determined that it was indeed a rheumatoid nodule in my right lung - but to be on the safe side, he had CAT scans done every year for 5 years.  As the nodule remained stable, he released me.  He said a cancer would grow quickly and be the size of a baseball or grapefruit.

Not a great choice.






I had breathing tests done and I have mild COPD and mild emphysema.  He does not want me to take any of the strong Arthritis medications as he has seen too many lung complications with those medications.  I have not been back to see him in awhile so no telling what is going on with my lungs now.  He told me to come back if I noticed any problems and so far - so good.


But - what does a person with severe arthritis do?  They have to try something - right?  Thankfully, I have moderate arthritis and get along with a small dose of prednisone and pain medication plus supplemental treatment like physical therapy, lots of different splints, surgery on my feet, resting, watching my diet, medications for other problems - etc.  I have had several problems due to the inflammation of RA especially in my intestines.  The RA has given me eye problems and I had a 90% blocked carotid artery plus numerous other problems.


It is really a toss-up.  You can treat the RA with strong medications and end up with more internal problems or you can take not much of anything and just struggle along and still end up with internal problems.


I also developed kidney dysfunction and the kidney specialist does not want me to take any of the strong arthritis drugs either - especially NSAID'S.  I have never taken anything but the 1st round DMARDS  (Disease Modifying Anti Rheumatic Drugs) - arthritis medications or prednisone. None of the DMARDs helped me at all.


I am also tired of the awful fatigue and not being able to plan what you want to do because you don't know if you will feel good enough or have enough energy to go through with whatever you might have planned.


They're tired and they can't get up

As the RA has also affected my intestinal tract, I never know if my digestive system will allow me to eat something so I have to be very careful of what I ingest.  It seems like we will plan to go out to eat and when the time comes to leave, I have stomach cramps or some other ailment.

I can't entertain like I used to be able to do as I can't stand up the amount of time necessary to cook.  My feet start to swell and hurt too much and I have to go and sit down.

I resent all of the time it takes just to take of myself - taking medications, putting lotion on arms and feet, drops in my eyes, etc.  I also have to schedule a rest every day after lunch.  That kind of cuts into the day!  I don't like that I can't wear different kinds of shoes and that my clothes have to be rather loose as I can't stand anything tight because it hurts my skin.

I also don't like the fact that I am unable to just get up and go and take whatever comes along.  When we travel, the bed has to be soft enough for me - so we book hotels where we know the beds are comfortable (more expensive).  We also have to book a suite-type hotel with a kitchenette so that I can eat breakfast in the room as I can't function until I take my medication and it has to be with food.  No going down and eating with regular people.

I don't like the fact that I can't be around anyone that is sick because of my weakened immune system.  That lets out many functions at the schools, church, birthdays and more.  My doctor doesn't want me to go near a hospital unless I am the patient.

Like you, in order to get things done, I have to organize everything like a military operation.  So much at a time - no more.

We all know there's more but that is enough for now.

Thanks Julie!
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