Thursday, July 23, 2009

Not a Typical Patient

"But, you're not the typical patient," said Valerie Tinley, NP who sat on the Primary Care Panel at the "Health Care Reform: Putting Patients First" discussion hosted by Dr. Val of Better Health.

When tossing around my impressions of the medical blogger/political event (although beforehand bloggers who expressed concerns about the rightwing tilt of the planned event were assured that it was not intended to be a political event), I keep coming back to Ms. Tinley's words. - "But, you're not the typical patient."

Ok, I admit that. Anybody who reads this blog is not likely to be the "typical" patient, unless you are from a PR company or think-tank who is monitoring what is said in the social networking world. But what exactly is typical?

The conversation I had with Ms. Tinley following the event stemmed from the question I asked the second panel. Now, I didn't take notes of my question but off the top of my head it went something like this.....
Hi. My name is Lisa Emrich and I am a patient blogger at Brass and Ivory. I am familiar with some of the medical bloggers who have spoken today (smiling hi). I have multiple sclerosis and rheumatoid arthritis. By the way, I want to say that I love my doctors and that they DO communicate with each other. In fact, they send reports to each other following appointments and know exactly what is going on with me and my care. (This being in response to a portion of the discussion which occured during the primary care panel.)

Just recently, I undertook an exercise to determine what exactly were the costs for routine care for me in one year - what my insurance paid, what I paid, and what was left unpaid. [Rounding the numbers], the total cost was $55,000 and some change. Insurance discounted $9,000 and paid almost $12,000. I paid almost $4,000 which left $30,000 unpaid for prescription costs. I did finally receive assistance for one medication, but in order to qualify, I have to earn less than 200% Federal Poverty Level which is roughly $21,000. I live here in the DC area where the median income is around $90,000 the last time I looked, so it's unrealistic to expect someone to life on $21,000.

I am self-employed and have an individual health insurance policy which has a $1500 limit on prescription coverage. My insurance is with Carefirst BCBS, probably the largest insurance company in the area. Kaiser Permanente also has the same limitation in their individual policies. Even the high-deductible plans offered by Carefirst on the individual market have the very same prescription limitation which is separate from the main deductible, so that wouldn't even work for me. And...the idea that I could get $1000 (or whatever amount) to spend on my own care would not come close. (This in response to a policy suggestion which Kim McAllister mentioned during the panel discussion. She then asks me: wouldn't you like it if insurance companies had to compete for your business?).

That's the way it works for my mother's health insurance. She's a federal employee and as a civil servant she participates in the FEHBP where the insurance companies do compete for business. I would love to have the options in health insurance which my mother does, and its coverage.

So my question is: What is the answer or solution which would address MY situation in health care reform? My situation is repeated over and over, and I don't hear anything in the discussions of pre-existing conditions or universal coverage which address this type of problem.

Initially, there was silence and I got several blank stares. It seemed that nobody knew what to say or wanted to be the one to say it. Then, Dr. Wes chimed in. "Eliminate direct to consumer (DTC) advertising of drugs. No more commercials for the next blue pill...."

What about those DTC pharmaceutical ads? I could live without them and wouldn't feel any loss. But, more importantly, what about the actual price tag placed on our drugs? Who is trying to keep those costs down? Medicare and Medicaid can't because they are not allowed to negotiate drug prices and it certainly doesn't seem that our insurance companies are working hard to push back.

When I was diagnosed in October 2005, my neurologist prescribed Copaxone which is the drug I had told him I was interested in using. My insurance would not pay for it so I was referred to the National Organization for Rare Disorders (NORD) who administers the assistance program for Copaxone. I qualified for a 50% award, receiving six months of drug with a charge for shipping/handling. After unsuccessfully appealing for additional assistance, I had to purchase Copaxone at full cost (well, actually the rate my insurance company had "negotiated").

It turns out that only 3 years ago (summer 2006) the cost of Copaxone was $18,000 annually. When I wrote a post - "the value of health or the value of money, what do you see?" - the annual cost of Copaxone was $21,000. That was January 2008, a mere 18 months ago. Now the cost of Copaxone is listed at $32,000 at

Jul 2006-Jan 2008: $18,000 + 16.7% increase = $21,000
Jan 2008-Jul 2009: $21,000 + 52.4% increase = $32,000
Jul 2006-Jul 2009: $18,000 + 77.8% increase = $32,000

There is no good reason that the cost of Copaxone or any of the MS drugs should have gone up almost 80% in three years. Absolutely no good reason.

But that's not what makes me a "not typical" patient. It is the fact that I actually know what my medical costs are in one year...and I care. Many of the complaints coming from the panelists stemmed from how patients are protected from knowing the cost of their medical care because "somebody else pays." This goes back to the "skin in the game" theory of health care reform.

Trust me - I've got skin in the game and it's getting burned.

When Ms. Tinley approached me after the "Putting Patients First" event, she suggested that I had misunderstood her when she discussed high-deductible health plans during her time sitting on the panel. I'm pretty sure that I didn't understand. She reminded me that, although the deductible would be higher, the premiums would be much lower.

Well, I never complained about my insurance premiums which are lower than they would be otherwise because I have an underwritten policy, meaning that I passed their "healthy" qualifications when I applied 9 years ago. What Ms. Tinley missed is that my prescriptions would STILL NOT be covered under the high-deductible policies currently available in my area. The reason is due to lack of regulations in the individual market serving the Washington DC area.

So frustrating that those who are making recommendations and supposedly are "putting patients first" do so without the detailed and specific knowledge which some of us "atypical" patients have. Doctors and patients work together as a team (most of the time). Without each other, this entire industry would not exist.

It is time that patient's concerns are heard loud and clear. If you have a blog, please write from your heart using concrete knowledge and examples. If you have an educated preference to the specific health care reform bills, and by this I mean one which hasn't been fed from propaganda websites, please contact your representatives and voice your opinion.

Personally, I want to see a public option available. I want to have the same protections which my civil servant relatives have. However, I don't want the same regulatory (lack of) oversight to continue which allows me to be without sufficient drug coverage. The same rules for everybody, standard minimum coverage including pharmaceuticals, whether the insurance is individual, group, self-insured, or public.

That's my opinion at this time. What's yours?


  1. Oh God, where to begin? I am currently without RX coverage. I am not allowed to marry my partner of 30yrs. I can afford MS drugs if I want to use all my life savings. But I need my (our) savings for the assisted living place I had to move to. It is so hard to read all I should, write all I should, do all the leg work when my leg don't work. I voted for my reps to take care of all these self-proclaimed groups are making decisions that will affect me. SO MANY GROUPS---we have at least one in my city, they are probably all across the nation. "Speaking" for me. Oh, Lisa, I am 52 and tired. I'm beat down.

  2. Lisa!
    Excellent post and a huge eye opener. Sad but true!!! There has to be something to stop this from continuing to happen. Or do we all need to move to Canada for our prescriptions. I wonder just out of curiosity... What does something like Copaxone cost for someone in Canada?

  3. My insurance problems are small potatoes compared to some, but I DO think that those who qualify for Medicare---me and thousands like me---- should be able to completely utilize all of its components, including its Part D prescription coverage. It's insane that older people, who generally need the most Rx's, have to have co-insurance to really afford Medicare. Part D should be as extensive as any large company's private group insurance or any civil servant's plan. Medicare insurance (Parts A,B, and D) should stand alone (for those who need it) as a thorough coverage, with no loopholes, "donut holes", or any other holes in the system. This is the ONLY coverage for many people.

  4. I think we need a single-payer system for insurance, with the ability of people to buy supplemental private insurance if they can afford to and want to, similar to what happens in the UK.

    But everyone needs coverage, both for prescriptions and everything else.

  5. Kick a$$ and take names later!! Good on ya, girl...and thanks for speaking out for those who still have not been heard!

  6. I will be blogging about my future healthcare crisis when I have more info from an insurance broker. It is very possible that I will have to switch to my husband's insurance. This insurance company is known for rejecting Tysabri pre-authorization until a patient has failed 2-3 other MS therapies. There have been some cases of patients having to stop a successful protocal with Tysabri and try something else to be covered!

    I am outraged but need more info to blog about this. Will have the FACTS for you soon!

  7. Lisa, You'll be happy to know that I spent a couple of hours on this past Saturday morning at our local farmers' market collecting signatures supporting Obama's health care principles--including the public option.

    We had a rally here in support of Obama's principles and 5,000 people showed up. We need to organize, organize, organize. This needs to be our number one priority.

    I write emails to my reps in Washington every week and call their offices about once a week. We need to do this and get all of our our friends to push Congress again and again.

    Together we cannot fail.

  8. Hi Lisa,
    Terrific information, thanks!

    I agree that we should stop the DTC advertising - I'm tired of the rambling list of side effects "including death" that may occur. But is that the reason that Copaxone went up 80% in 3 years? Doubtful.

    Also, I wonder if anyone has addressed the issue of skyrocketing malpractice insurance? Doesn't that keep the medical costs high, plus cause doctors to perform way too many tests to cover their butts?

  9. Hey Lisa -
    Great post and I wonder a lot about the cost of copaxone increasing, when the use of it is going up. Anyway, am responding to the question about Canadian insurance and drug costs. Like the US, drug companies have us by the throat. I am covered for Copaxone soleley because my loving employer has continued my access to the company plan for as long as I am deemed "employed" (which, as I am off on LTD, lasts for another year or so). This plan covers all prescription costs except a $2 co-pay. After that time, however, the only plans I can get for drugs (and we must pay for these, but fortunately I can get one as it would be a continuation of my employment plan) cover a whopping $750 per year. Copaxone is $1400 a month here. I can apply to various programs for coverage, but don't know how this will go...