Another Anniversary

I met my husband in early 2002 and we got married in 2005, then everything changed. We had about three months of a me-being-healthy marriage before my health got the better of me.

We married in May and in August I ended up in the emergency room because I had (previously unknown to me) uterine fibroids, one of which decided to die off which caused a massive internal infection, intense pain, ambulance trip to the ER, followed by several days on an IV antibiotic and a week of bed rest at home (when the roofers put in a new roof).

Exactly 11 years ago today, I had a open hysterectomy where they removed my uterus (and all the evil fibroids) and one ovary. I spent six weeks at home before returning to work in downtown Boston. During those six weeks, I was not supposed to climb stairs at first and was allowed one trip down in the morning - with help from my husband - and one trip up in the evening. I slowly got better but it was a fairly big surgery and it took quite some time to get back to 'normal'.

Before that I was healthy and we did a lot of fun things together. A month after my trip to the ER, we were hiking in Lake Tahoe. For another 17 months after, I remained relatively healthy - meaning no trips to the ER or anything. Then I went for my annual mammogram and things went further down hill - healthwise.

It was eleven years ago today, I learned how to be a patient with online health resources. When I was told I needed a hysterectomy, it had been about 4 years since my previous surgery - meniscus repair after a bad day of skiing - and I hadn't really cared about research at that time. But with a hysterectomy? That was a completely different story, now I needed some information.

I started by asking my friends (the doctors gave me a pamphlet or something else just as useless) and found one who had a friend who had a hysterectomy who sent me to hystersisters.com. I signed up and learned about the world of online, patient supported communities where patients help each other. It was a wonderful change.

Before the internet, patient information was very limited. After the internet, it still took a while for the internet to switch from academia/education/science (it was created by a bunch of geeks) to the general public, and then us patients. But I digress...

In the weeks before my hysterectomy on December 12, 2005, I learned for the first time the benefits of patient supported online communities. I found a friend who had a friend who sent me online for information. It was so much better to find the support of strangers who reach out with a hand for support and their knowledge to help someone who went through what they did.

This is an anniversary to celebrate - when I first learned about online patient support.

Be Part of the Patient's Voice

The FDA has actually started listening to the voices of patients. Yes they have actually attempted to reach the 20th Century (not quite ready for prime time or the 21st C but we can call it progress).

I was pleasantly surprised to read this article on how the FDA has actually reconsidered decisions to pull drugs off the market as a result of patients and caregivers lending their voices. So you can do it too. Don't be afraid to write to a pharma company and the FDA if you disagree with a decision. The one note of caution is that often drugs are pulled due to side effects. So you may benefit from the treatment but beware the potentially nasty side effects.

Me, I think hyou can tell I never fail to speak my mind!


In addition, the article contained this incredibly helpful schematic FDA's approval process.

Specialty Drug Prices are Killing the Patients

I know I have blogged about this before but it just irks me of the inequalities that I see in this system. I do not have a grudge against big pharma. I really do not. I just wish there was more change in the system where drug companies seem to be tightening the noose on patients who are trying to survive.


Is your life worth $100,000 annually? Can you afford $1000 monthly in drug copays? If you ask the big pharma companies, it is. The majority of the new drugs approved last year by the FDA are specialty drugs, 19 of 28 (which is an appallingly low number of approvals to me but that's another story for another day). These come with the hefty, specialty price tags.

"Fewer than 4 percent of patients use specialty drugs, but they account for 25 percent of total drug spending in the United States; and the growth of specialty drugs is a key factor driving up health care spending, according to PricewaterhouseCoopers."

Many insurance plans provide affordable co-pays for the drugs. But more and more, as a cost saving effort, are switching to tiered plans. I have one where generics are very cheap but brand names drugs can be very expensive. They can be 35% of the retail... I can avoid much of that by mail order but still when one month of one drug has a co-pay of $105, it begins to add up. More and more insurers are moving to this type of coverage as they cannot afford to keep up with the new drug prices. I do not blame them with the costs of these drugs.

We have an industry which is full of employee perks and generous salaries and we have insurance companies who are trying to balance their budgets and patients who are being killed by their drug payments. Where does that problem lie?


This system needs to change. Its not all the pharma companies fault, there is some blame to be borne by the insurance companies as well. Moving costs to the patients is not the best option either.

Are we empowered yet?

This has been a hot topic for years now, patient empowerment. Do you really know what it is? I found a definition on Navigating Cancer this says:

"Patient Empowerment involves active participation by the patient working in partnership with a healthcare team to receive the best care.

Patient empowerment begins with leaning about one’s own illness or condition, and participating in treatment decisions. It continues as a process, first by keeping a full and comprehensive record of one’s own medical history. Diagnosis, treatments, and medications are tracked by the patient, as well as symptoms and treatment side effects.

Through the process of patient empowerment, patients openly communicate with their healthcare team, contributing to the whole picture and individualizing care. In doing so, physicians are encouraged and enabled to provide optimal care in partnership with their patients."

I think I became empowered years ago. Back in the 1980s when I was younger, I didn't ask as many questions but you can be sure by the 1990s I was good at asking questions and learning. By the mid 2000s, I was on top of it because I had my friends, the internet and Dr. Google.

I now have rules for myself that I think should apply to everyone:

1. You can't have an ailment unless you can spell, pronounce, and define it.
2. You can't be on a medication without being able to spell, pronounce it, and understand the big things it does, why you are on the dose you are, and what are the main side effects of which  to be concerned.
3. You must be able to talk to your doctors about what you have and how you are doing and not blindly follow their advice like a lemming.
4. Finally, you must be comfortable with your treatment plan.

 If you aren't empowered its time to get to work.