Removing the 'crap shoot' aspect from RA treatment

Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:

1. Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile. 
2. Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
3. Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
4. Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
5. New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.

 With RA, you can only hope the drug they put you on will work. When one stops working, they try something new. When they give you a new drug, you have to wait 3-6 months to see if there is any benefit for you. As you wait, the disease progresses.

The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.

It sucks.

Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.

But now a rocket scientist has come up with a blood test that will  help take the 'trial and error' or 'crap shoot' process out of  RA treatment. Its about time.

Medical guidelines discovered

Yesterday, in my usual scouring of the internet for the magic cure for all my ailments, I found an article about variability in cancer treatment and compliance with guidelines. Its an interesting read and how to make sure you are getting the right treatment with second opinions, good insurance coverage (plan ahead), yada yada yada.

And then I asked myself, what guidelines? I have always assumed that some little group of doctors got together and over a few beers put together their guidelines for treatment for each ailment. Little did I know that NCIC provides guidelines for treatment of all cancers. Some of them are even available in patient format - meaning readable in by normal people who did not go to medical school. You can see the treatment guidelines for stage I and II breast cancer here.  And a list for all available patient guidelines by cancer type.

I cannot tell you how cool this is. How often have I wondered about my treatment plan, was it in compliance with guidelines - meaning did it give me the best possible treatment? It was a lot of good reading and I want to review it all.

Then if you go to the link for clinical practice guidelines, at the very bottom of the page is a link to all guidelines which takes you here for even more reading but it quickly becomes a bit technical because it is aimed at doctors. Feel free to start deciphering.

Finally, there was a link to the guidelines for other diseases - meaning not cancer - which are at the National Guideline Clearinghouse. These are uber-cool. I immediately looked up RA and will move on to fibromyalgia shortly.

So do not click the links unless you have a few hours to give yourself reassurance that your treatment plans are correct. They will suck you in quickly. I am going to work an hour late because I got a tiny bit side tracked.

Those pesky guidelines again

You get diagnosed with an ailment, you follow (blindly or  not) your doctor's recommendations.  You make your decisions and you undergo treatment.  Your doctor is following the guidelines and you do your research and make your decision based on their recommendations and the current guidelines.

But what if, the guidelines have changed recently and you need to rethink your decision. What would you do with the old guidelines or what would you do with the new guidelines?

I found this story interesting of a local journalist confronted with a DCIS diagnosis and changed guidelines. DCIS is often over treated - or so the current guidelines believe. But which cases will go on to become something bad or not. What treatment options should be followed? Its a case of mastectomy vs. lumpectomy vs. no surgery.

As patients spend more time educating themselves on treatment options and guidelines, their decisions are more complicated. They want to be the educated consumer. But it can be very confusing to try to learn about statistics in medical care in treatment options.

Damn those pesky guidelines.

Medical guidelines discovered

Yesterday, in my usual scouring of the internet for the magic cure for all my ailments, I found an article about variability in cancer treatment and compliance with guidelines. Its an interesting read and how to make sure you are getting the right treatment with second opinions, good insurance coverage (plan ahead), yada yada yada.

And then I asked myself, what guidelines? I have always assumed that some little group of doctors got together and over a few beers put together their guidelines for treatment for each ailment. Little did I know that NCIC provides guidelines for treatment of all cancers. Some of them are even available in patient format - meaning readable in by normal people who did not go to medical school. You can see the treatment guidelines for stage I and II breast cancer here.  And a list for all available patient guidelines by cancer type.

I cannot tell you how cool this is. How often have I wondered about my treatment plan, was it in compliance with guidelines - meaning did it give me the best possible treatment? It was a lot of good reading and I want to review it all.

Then if you go to the link for clinical practice guidelines, at the very bottom of the page is a link to all guidelines which takes you here for even more reading but it quickly becomes a bit technical because it is aimed at doctors. Feel free to start deciphering.

Finally, there was a link to the guidelines for other diseases - meaning not cancer - which are at the National Guideline Clearinghouse. These are uber-cool. I immediately looked up RA and will move on to fibromyalgia shortly.

So do not click the links unless you have a few hours to give yourself reassurance that your treatment plans are correct. They will suck you in quickly. I am going to work an hour late because I got a tiny bit side tracked.

Removing the 'crap shoot' aspect from RA treatment

Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:

1. Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile. 
2. Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
3. Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
4. Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
5. New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.

 With RA, you can only hope the drug they put you on will work. When one stops working, they try something new. When they give you a new drug, you have to wait 3-6 months to see if there is any benefit for you. As you wait, the disease progresses.

The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.

It sucks.

Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.

But now a rocket scientist has come up with a blood test that will  help take the 'trial and error' or 'crap shoot' process out of  RA treatment. Its about time.

Too many of us aging

We are getting older so will there be enough doctors to care for us?  Especially for cancer care?

And will we understand our options?

Us baby boomers need to stop aging to doctors can catch up with us. We are reaching the, and I quote, 'tumor prone years' as a generation. (I hope I have already had my share of tumors, thank you.)

In addition, oncology is a quickly evolving medicine these days - personalized medicine being on the forefront - as scientists are racing to find a cure for cancer. The doctors have lots to keep up on.

Patients do too. They need to stay informed on their options and understand what treatments are curative (good word) vs. which are palliative (bad word). We need new ways to help patients understand their options.

Finally treatments are getting more complex and not necessarily very helpful. "Of 13 cancer treatments approved by the FDA last year, only one was proven to extend survival by more than a median of six months, the report said. The drugs all cost more than $5,900 for each month of treatment."

Ouch! (That's over $70,000 per year... but wait no one is living long enough to take it for a year.)

Finally, here is a list of recommended questions for patients facing a cancer diagnosis:

• How long does the average person with this cancer live?
• What is my likelihood of a cure?
• If I cannot be cured, will I live longer with treatment? How much longer?
• Will this care directly treat the cancer?
• What are the side effects?
• Am I eligible for trials?

If your health team does not have answers, “you need to find another set of providers,” Ganz said.

So if we all could just stop aging, and let the medical world catch up, we might be better off. I am still 37 so I am doing my part.

Insurance wars and woes

This morning's news includes a story on a gentleman with stage IV esophageal cancer who is disputing with his insurance company to cover the costs of his treatment. He is treated at Dana Farber and is pursuing alternative treatments. I am fully supportive of efforts to prevent insurance companies from making medical decisions.

Also, I am a big fan of preventing bloated insurance costs where people expect everything to be covered and then can't understand why their premiums keep going up in leaps and bounds. There has to be a happy medium while is why insurance companies need to be allowed to draw the line somewhere.

As you are aware, I do not believe insurance companies are capable of making individual medical decisions. They may employ their own oncologists and other doctors to review decisions. But unless the doctors have met with the patient and examined them, they have no idea what they are doing. At the very least the patient's doctors recommendations should be the guidelines followed. Not someone who is reading an actuarial guide and cost/benefit analysis. That is no way to make a decision that might permanently affect some one else's life.

However, and this is a big fat HOWEVER, if the treatment has not been shown to have any proven results I do not believe the insurance providers should be required to cover it.

There are all sorts of quackery theories on curing cancer and myths about treating and curing cancer. There are also many alternative treatments that are not necessarily covered by insurance but have proven to be beneficial to cancer and other patients. This would include things like acupuncture.

The problem with this gentleman's request is that he is asking for coverage for something called Insulin Potential Therapy or IPT. I googled it and the first two results were from Quackwatch.org and from the American Cancer Society showing that there was no real proof it works.

While I understand he is fighting for his life, I am actually on the side of the insurance company here. The treatment he wants has not been shown to be effective. He has a full medical team available to him where he is being treated. While he may be feeling better currently, there is no way to tell if it can be attributed to the IPT or some other reason.