Di Has Stories…

(and they’re all true)

Disappointment: The 2008 HAEA Conference October 20, 2008

Filed under: being a sickie,bitching,shit i believe in — Diana @ 9:17 pm

This weekend I attended the annual conference of the US Hereditary Angioedema Association conference.  It was the first conference I’d attended – I’d actually registered for the last one in St. Louis, but that was right when we closed on the house, and I didn’t think that I could move house and drive to St. Louis all in a couple of days.

So I was really excited to go this year.  As a mutant (someone with no family history of HAE), I’d never actually met someone with HAE, and I was so excited to do so.  I’d get to meet other people that swell up like I do, and ask them questions about what’s normal and not normal, and find out how many “mutants” there are, and, and and….I was just about bursting all last week.

Because money is so tight in our house right now, I’d gone back and forth as to whether to go.  But after last week’s news that the drug we’ve all been waiting for is approved, Jeff and I decided that the money would come from somewhere, and that I was going to go.  It was too important for me to get the information to not go.

I got to Chicago at about 3:00 p.m. on Friday, and checked into my hotel with one of my roommates, Patty.  She is also a mutant, and 57 years old.  We talked for a few hours before it was time for the cocktail hour that kicked the conference off, and then went downstairs for free booze and appetizers.  We met a mother and 19 year old daughter – the daughter is also a mutant, and an older couple where the woman has HAE.  We also got to talk to one of the scientists from the drug companies where I learned a little something about my own treatment options.

(Background:  Hereditary Angioedema is caused by the absence or malfunction of the blood protein C1 esterace inhibitor.  There are several types of HAE:  Type I’s blood tests show an absence of the C1 protein.  Type II’s have the protein, but it doesn’t function properly.  Type IIIs have “normal” blood results, but show all of the symptoms and may react positively to FFP (fresh frozen plasma) treatment.  I have Type III.  The scientist that I talked to said that there is a 30% chance that the newly approved C1 treatment will work for me.)

The next morning we all met for a very nice breakfast (you know, more than doughnuts!!), and settled in for the meetings  First there was a reenactment of the presentation before the FDA Blood Products Division, which was very effective – I can now see where there was an almost unheard of unanimous vote to approve the C1 product.  This was followed by an address by Dr. Marcel Levi, who walked us through the use, effectiveness, and safety of C1 in Europe (it’s been legal there for 30 years) and the studies that back up that use, safety and effectiveness.

After that, the drug companies started talking.  First was LevPharma, whose product, Cinryze, is the newly approved product.  They talked about the clinical studies (an oddity of the US drug approval process – even drugs in use for 30 years elsewhere have to go through all the studies and back up that a brand new drug does), the safety, efficacy, and presumed time to market.

During the question and answer session is when i started getting nervous.  It turns out that LevPharma is only five years old, and was started for one purpose – to bring Cinryze to the market.  Also, LevPharma has been bought out by ViroPharma (after which shares in ViroPharma fell 20% according to SmallCapInvestors.Com)  for $443 million dollars.  ViroPharma itself only has one drug on the market.

The folks from Lev/Viro were answering questions about insurance coverage and how to get the drug. They have set up a call center – Cinryze Solutions – to help people deal with their insurance companies, and were trying to get all of us to sign up for the program, which included all sorts of personal information that I was not terribly interested in giving out.  The women running the table were running people down and using their names to guilt them into signing up for the program. I’m pretty sure it was less about “helping” the patient and more about knowing who the captive market is.  The entire way it was approached made me uncomfortable.  And it’s not a service that I need – I’m a professional insurance agent, and have worked with appeals for years.  If I need additional documentation, I will turn to my doctor, not to a drug company.

After LevPharma was done, CSL Behring started talking.  They are the ones that actually have the drug approved in Europe.  They have been in business for more than 100 years, and only work with orphan diseases and biologics.  Their presentation spewed the same research statistics and findings, which isn’t surprising, as there is only ONE way to treat this disease that is effective (replacing the C1 that the patient doesn’t have).

This is where I started looking at the schedule.  Out of an eight hour day of meetings, five hours were taken up by pharmaceutical companies, an hour and a half was for us to “interact” with the pharmaceutical companies, and only an hour and a half was an open forum for patients to talk to doctors and pharmaceutical company scientists.

This is not what I was going for.  I wanted interaction with other patients – there was no time for that.  I wanted some interaction with doctors – that only happened with the pharmaceutical company people.  The HAE people were totally kissing the asses of the pharmaceutical companies.  They were branding their own website over any other information source, but trying to say that they were “drug-neutral.”  (It’s true – it seemed to be that they’d be ok with any of the drug companies.)  I found out that not only were the pharmaceutical companies underwriting the entire conference, but they were also providing financial assistance to the patients.

They were trying to bribe us into using their product….when their product is the only thing that can save our lives.

I felt dirty.  I thought that this was a time for patients to get together, build a network, and learn from each other.  Instead, it was a three day opportunity – that I couldn’t really afford to go to – to be marketed to by Big Pharma.  All I learned was that I was a big source of money to these people*, and they wanted to make sure that I was buying into it.

*(It’s estimated that every dose of the C1 will cost $1,000 – $1,500.  Patients must take one to two doses every three to five days.  This means that I will give them $73,000 – $243,000 per year, every year, for the rest of my life.  At least until I hit my insurance lifetime max, which I will in 12 – 41 years.)

I’m pissed.  I’m pissed that pharmaceutical companies behave this way – I knew about these sorts of things, but had never seen it in action.  And I’m also irritated that so many of my co-patients (and that’s how we are referred to – as patients) lapped this shit up and expressed such gratitude for being ripped off and marketed to.

I’d had enough.  I went home.  I now have to think about whether to continue my relationship with an organization that is really just facilitating marketing to Big Pharma.  I am once again disappointed in an organization that I thought was only looking out for me and others like me.  As usual, we are just consumers.


One Response to “Disappointment: The 2008 HAEA Conference”

  1. peoplefrommypast Says:


    It really sucks that there was so much pharmaceutical propaganda there. I also thought it was going to be a really cool opportunity to connect with other people who are dealing with similar stuff, and it sucks that it turned out to be such a disappointment.

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