Right to try laws

I have mixed emotions on right to try laws. These are laws which hope to circumvent federal laws and get drug companies go make new and experimental drugs available to patients who are looking for that one last chance, when all other possibilities have been exhausted.

Colorado, Missouri, and Louisiana have already passed these laws due to strong social media programs.With right to try, the patient needs a prescription or recommendation from their doctor for th e new drug that they take straight to the drug company.

It sounds like a good idea for patients who are looking for that last chance. There are patients who have benefitted from these last chances but here are the issues:

• the FDA already has a program for compassionate use where patients have to fill out s lengthy form that usually gets approved.
• Drug companies who provide drugs under state law and ignore federal law run the risk of making the federal government a bit unhappy,

While streamlining the federal governments approval process may not be a bad idea, circumventing the federal government might not be the smartest idea. I think I would want to lobby my federal, not state, legislators to recognize that patients are smarter these days.

Doctor's Orders

Do you heed your doctor's orders? (Do you floss more because your dentist asks?) Two-thirds of Americans do not take their prescriptions medications as prescribed. That would mean that most of us are screw ups.

Yes there can be the issue of cost of the medications but aside from that it is sheer laziness or ignorance. I'm  not sure why.

The problem with not taking your medications as requested can result in life risking events - uncontrolled asthma or heart condition can result in an expensive Emergency Room visit or hospital stay. Even if its covered by insurance that adds costs to the medical system. And its 125,000 extra deaths each year.

I do my best to take my medications as requested by doctors. They make it damn complicated.

This is what I do:
Take this one daily, except Monday's when you should take 1/2 a pill.
Take these two pills weekly, 12 hours after your methotrexate injection.
Take this pill in the morning at least an hour after you take you first pill.
Take an extra pain pill at bedtime or at least 3 hours after taking evening pills.
And if I take all my evening pills at the same time I get a stomach ache so I need to split them up and take my vitamins later.

Every week there tends to be a little pile of vitamins that I missed at one time or another.... So I'm not perfect either.

Mouth sores and other medical adventures

I never really had a problem with mouth sores. Until chemo that is. For those of you who are uninitiated, think canker sores.Ouch

During chemo, I was lucky enough to end up with mouth sores fairly frequently for the first few months, until my protocol changed to Taxol. My oncologist prescribed what is known as ''Magic Mouthwash" which his mixed by the pharmacist. Until that point, I never realized that the pharmacist at Walgreens or CVS would mix things to order in this day and age. I was under the mis-assumption that everything came out of a prepared bottle and was just resorted and relabeled.

But I digress. During chemo, I enjoyed Magic Mouthwash to solve my mouth sore issues. So why is she blogging today about life six and 1/2 years ago you ask? Because I am now on Methotrexate for my RA and it causes mouth sores. I have two on the tip of my tongue. Ouch.

So Wednesday afternoon I went to see my rheumatologist. She prescribed Magic Mouthwash for my then one mouth sore. I asked what is in it and found out they usually prescribe a combination which contains Benadryl, lidocaine (pain), Maalox (coating properties), and an anti-fungal. I said I am allergic to Benadryl. She had to find a combination without Benadryl.

She said she would have it, and another new prescription, called into the hospital pharmacy so she could communicate directly with the pharmacist. I had another test and then stood in line at the pharmacy to find out that my prescriptions had not even made it to the pharmacy yet, never mind be filled. They called the doctor's office and found out that the nurses had a question on her notes and had to wait until she was done with her next patient. I said fine, please have them sent to m y local pharmacy and I'll pick them up later.

Two hours later, I called the pharmacy and they did not have the prescription yet, only another one which I decided to pick up in the morning. But it was too late to call my rheumatologist back to find out about the missing 'magic'. And my mouth sore still hurt.

Yesterday morning I was back on the phone with the doctor's office. It was a computer glitch the prescription was in the system but the doctor hadn't signed off on it for some reason so it could be sent to the pharmacy. A second mouth sore started to emerge as well.

At 2pm I called the pharmacy to see if the magic was ready. No it wasn't. I called the doctor back and the secretary said it had been sent to the pharmacy but my insurance company wouldn't cover it because it contained Maalox which is available over the counter so it had been punted back over to my doctor for another revision and signature.

At 4pm I called the pharmacy again and found out they had just received the prescription and wanted an HOUR to fill it as they had to mix it. I went home and got comfy because my feet hurt and my tongue hurt, with its second mouth sore. They called 30 minutes later to say it was ready. Grr.

I got back in my outdoor clothes to go back to the pharmacy and picked it up. The second I walked in the door, I grabbed a spoon and swished it around my mouth. Relief finally!

After a lot of red tape, my tongue stopped hurting... That was just one day in my life as a patient. And my tongue still hurts when I eat anything.

Right to try laws

I have mixed emotions on right to try laws. These are laws which hope to circumvent federal laws and get drug companies go make new and experimental drugs available to patients who are looking for that one last chance, when all other possibilities have been exhausted.

Colorado, Missouri, and Louisiana have already passed these laws due to strong social media programs.With right to try, the patient needs a prescription or recommendation from their doctor for th e new drug that they take straight to the drug company.

It sounds like a good idea for patients who are looking for that last chance. There are patients who have benefitted from these last chances but here are the issues:

• the FDA already has a program for compassionate use where patients have to fill out s lengthy form that usually gets approved.
• Drug companies who provide drugs under state law and ignore federal law run the risk of making the federal government a bit unhappy,

While streamlining the federal governments approval process may not be a bad idea, circumventing the federal government might not be the smartest idea. I think I would want to lobby my federal, not state, legislators to recognize that patients are smarter these days.

Prescription Dollars Wasted By 913 Doctors

This kind of thing really pisses ticks me off. Everyone in the country is trying to do their part to help reduce medical spending. Most people really do try. Patients get generics, are taking better care of themselves, doctors think about costs when suggesting treatments, hospitals are trying to manage their costs in many ways, insurance companies are managing and lowering their overhead costs.

Then we have a bunch of 913 loser doctors who prescribed name brand drugs without allowing for substitution by generic. Now I realize that some people need the name brand drugs  because the generics are not the same for them. But some investigative journalism was done and found out about these losers.

A small portion of doctors nationwide is costing American taxpayers big time because of their tendency to prescribe name-brand medications through Medicare even when generics are available, according to an analysis by ProPublica, a nonprofit organization producing "investigative journalism in the public interest."

The biggest offenders are 913 practitioners who, thanks to disproportionately prescribing name-brand drugs, cost taxpayers an extra $300 million in 2011, say ProPublica's Charles Ornstein, Tracy Weber and Jennifer LaFleur. Each of these doctors wrote at least 5,000 prescriptions that year, according to the report.

$300 million a year is not chump change. And these doctors had ties to pharmaceutical manufacturers. So if you multiply 913 doctors times 5000 prescriptions (pause while I find a calculator because my brain is not that smart 5*3=15, carry the 1, 5*1 is 5 plus 1 equals 6, 5*9=45) equals 4,565,000 prescriptions each year. 

And think of that year after year. $300 million and 4.5 million prescriptions times kickbacks which send them on fancy vacations and secret accounts in the Caymans at the expense of the American taxpayer through Medicare. Now you understand while I call them losers.

I am glad about this piece of investigative reporting. I hope those losers now get fined, lose their medical licenses and have to start paying back. I also hope Medicare fixes the loophole.

Prescription drug commercials

Doesn't anyone wonder why we have to put up with the warnings on drug ads and commercials? The FDA is considering shortening these lovely side effect lists that we all like to make fun of.

I have a better idea. Why don't they ban direct to consumer advertising for prescription medication. I found out that it is illegal everywhere except the US and New Zealand. So why can't they just get rid of it?

"Those who dislike the practice, according to ProCon.org, might argue that the money spent on advertising is passed on to consumers. Ads cause people to pick medicines based on the effectiveness of the ad rather than the effectiveness of the medication, and ads cause patients to desire and request medications from their doctors that may be unnecessary, thus leading to an over-medicated and unhealthy society. Those in favor of these ads argue that consumers should be informed about medical conditions and therapies, and the ads even help to de-stigmatize certain conditions. The ads might even be said to help demystify medical treatment and doctors themselves, who should not be seen in such a powerful, almost godly light."

The argument that some people will pick medicines based on the effectivness of the ad not the medication is valid. But I will agree that the ads might help de-stigmatize certain medical conditions. Who remembers being embarrassed in elementary school when your mother would write a note that said you had 'diarrhea' and had to stay home? Now we can blog about cancer and not piss off most normal people (a note to the British blogger).

Lets just say they spend $5 billion (with a b, not an m) in direct to consumer advertising each year. What if they applied that tiny chunk of change to lowering their prices? They also spend another $20 billion promoting their products in other ways - this would be maybe (and I am speculating here) conferences, speaker fees, packaging, market research, and more.That $20 billion could also help reduce medication costs.

This is all my opinion but I don't think those ads have ever helped much - just confuse everyone with their side effect lists. And allow the creative ones among us to create endless spoofs. If they are becoming a joke in popular culture, that might give you an idea of how well the ads really work.

Damn, more meds!

And an expensive one at that. My pain doctor put me back on Lyrica. We tried it about four years ago for the nerve pain issues I was having with my back. We decided it didn't really work for me after about 9 months so I went off it. But now that I have been diagnosed with fibromyalgia, my doctor is suggesting I try Lyrica again.

I don't have a problem with it. My fibro pain has been pretty bad. Just sitting still, knitting, watching TV, driving, or whatever, all of a sudden I will get a bone deep pain in my arm that shoots up to about a 9 or so. Then it goes away. So its no like you can treat it specifically. Sometimes I ice it afterwards if there is any residual achiness. I get other pains as well.

These are all signs that my fibro is active. The decision at my diagnosis was to treat my RA first and see if we can get it under control and then focus on my fibro. So now we are at that point.

I went and picked up my prescription yesterday and took my first dose - twice a day. That's where the problems started. First I have to talk to my insurance and see if I can get it cheaper - $70/month right now!!!

Next I have to figure out when I can take it in the morning. The Lyrica bottle says I can take it with any other medications as it doesn't interact. The other pill I take in the morning, Levothyroxine or synthroid, clearly states take one hour before or four hours after eating. Do not take other medications or vitamins for four hours. So now I have to call the pharmacist and get a real answer.

Finally I have to talk to my meds therapist about interactions with my other medications. This is what I have to do after most new prescriptions

Adding one more medication is not easy. I am on a lot of different things that cause different interactions. Some pain medications and some anti depressants work the same way or in different ways that can cause problems.

This is complicated..... Crap.

Medication management

There is all kinds of advice out there on how to safeguard and manage prescriptions. One article I read recently even advised keeping them in a safe. I thought that was a bit of overkill but I am careful.

I have several issues with my medications. One of them is toxicity to others. My cat can't recognize a chipmunk under his nose these days but there is a family joke about the vioxx incident* that he survivied. I wouldn't put it past him to try to ingest something he finds on the floor. I am currently on methotrexate which is actually a chemotherapy drug which comes in little sealed bottles and has all sorts of warnings.

I make jokes about knowing when you are on the good drugs as they have street value. A drug addict would be very happy with the contents of my little stash. When we are going away, I hide it away a bit more than usual. I realize that if someone broke in my medicaitons would be a target - that is why they are not sitting out. Added to the fact that they would completely cover my bedside table, I needed a larger storage area for them.

I am also aware of the addictive potential of several of my medications. I am careful to think about when I take my medications, how often, and how much. I know two tramadols make me very stupid so I avoid that. I make sure I take my daily pills and use one those pill boxes with a daily box to make sure I don't forget or even take them twice (which would be a huge mistake).

Finally, every week when I fill our pill boxes I make sure everything gets filled and we don't run out. The mail order prescriptions are a pain when you run out because I need the emergency short term fill at the local pharmacy while waiting for the replacement to arrive by mail. Never mind the times I have to wait for the damn insurance companies to authorize refilling them.

I think I am just trying to be an adult here - a useful thing to do from time to time.

Never share prescriptions

This is a prime example of why to never share prescription medications. A young woman in California took an antibiotic from a friend and ended up with a horrible reaction and is hospitalized with an allergic reaction that took a very nasty turn.

Two comments to note: First of all the friend had an antibiotic left from a previous cold. She should have taken all the antibiotic and not stopped it. Second of all, NEVER SHARE PRESCRIPTIONS!

I have seen and heard this countless times. A friend gets her Ativan from her sister. She also gets some pain meds from her. I think she should just go to the doctor and get her own prescriptions but she doesn't want to take the time. I have been on retreats where one woman wanted to see if she could get an Ativan from anyone, complete strangers met that afternoon. Someone offered one to her. Really? Bring your own.

Another additional problem with the habit of sharing prescriptions is making sure they do not end up being abused by others.

I can tell you that I have had allergic reactions to new prescriptions. Every time I get a new drug now, I read the allergic reaction list on what to look for. What happened to the woman in California is unfortunate and a warning to others not to share.

Someone else is getting rich here - and its not the patient

I have often wondered why medications are so expensive here and so cheap in other countries. I read this really long article, which focuses on asthma drugs but can be applied to any prescriptions:

I learned this:

"In all other developed countries, governments similarly use a variety of tools to make sure that drug manufacturers sell their products at affordable prices. In Germany, regulators set drug wholesale and retail prices. Across Europe, national health authorities refuse to pay more than their neighbors for any drug. In Japan, the price of a drug must go down every two years. 

Drug prices in the United States are instead set in hundreds of negotiations by hospitals, insurers and pharmacies with drug manufacturers, with deals often brokered by powerful middlemen called group purchasing organizations and pharmacy benefit managers, who leverage their huge size to demand discounts. The process can get nasty; if mediators offer too little for a given product, manufacturers may decide not to produce it or permanently drop out of the market, reducing competition."

So basically here in the US we are held at the mercy of the drug manufacturers and their middle men.

And here's this little kicker. The manufacturers always say the research costs drive up the costs of their drugs. But how about this little factoid:

"Critics counter that drug companies spend far more on marketing and sales than the 15 percent and 20 percent of their revenues that they devote to research and development."

In the real world, most companies budget a lot less of their revenues for marketing... Do we really need those ads with the disclaimers that make things sound horrible?

So my thoughts now are:

1. We really need a system to tell drug companies we will not be at their mercy and medications must be made available at affordable prices
2. Drug companies are getting rich at the expense of patients
3. Because of the high costs of drugs, insurance companies are getting involved in decisions which should be left to doctors
4. And to the drug companies, I would like to say "liar, liar, pants on fire" to their claim their research costs are what drive their high drug costs.