The looming precipice

There is a looming precipice here for the biotech industry. Its the pricing precipice. There is an article on this in today's Boston Globe. The three main issues for the industry are:

1. There are no biosimilars (think generics) to help bring down the costs. And the biotech companies have been fighting them with  multiple lawsuits to prevent them.
2. Salaries have caught up with pharmaceutical companies.
3. Prices have started to make headlines.

'Tony Dodek, associate chief medical officer at Blue Cross Blue Shield of Massachusetts, says high-priced “specialty drugs” represent just 1 percent of the prescriptions handed to Blue Cross’ members, but 25 percent of the insurer’s spending on drugs, a share that is rising rapidly. “That’s not sustainable,” Dodek says.'

'While we are seeing a profusion of breakthrough treatments..., the price is often determined by asking, “What’s the highest price I can charge and get away with,” said Alison Taunton-Rigby, a former biotech executive who serves on several corporate and nonprofit boards. Speaking at a recent industry conference, Taunton-Rigby said, “It’s an attitude we need to talk about. I think we actually have a black mark against us as an industry.”'

'Many in the industry will complain that they need these high prices to justify the millions of dollars burned bringing a new drug to market, and attract new investment to cultivate the next generation of drugs. But the industry needs to consider ways to trade short-term “profit maximization” for its own long-term vibrancy.'

The biotech industry has been producing drugs which save lives but also cost more than the average house for a course of treatment. With a house, you can get a mortgage with a prescription, you and your insurance company will go broke. An example of the new Hepatitis C drug which costs $84,000 for a 7 month course which cures 90% of the patients. That's cheap compared to a $175,000 liver transplant.

A new drug to come out later this year for Cystic Fibrosis will cost over $300,000 per year. That would be the same as buying a new house every year. Who can afford that?

Will I be what is expected?

Later today I am getting together with some old friends, from high school. One of them I got together with a couple of months ago, the others I haven't seen in decades. Will I be what they expect? I have no idea.

In recent years, I have skipped telling people about my cancer crap right away. I just say I have rheumatoid arthritis and fibromyalgia - and some people do not understand those implications.

I have found that I skip telling people about cancer until I know them better. There is no reason to. And sometimes they run away. A few years ago I reconnected with an old friend and she wanted to get together until I said 'breast cancer'. And I never heard from her again.

My health has changed me in many ways. Internally both physically and emotionally, externally just physically only. I have lots of physical limitations - no twisting, lifting, carrying, shoveling, raking, vacuuming, biking, skiing, and lots of other things. I have some emotional issues such as depression and anxiety. Who wouldn't with my health? I have nothing to be depressed or anxious about? Hahahahahahahahaha.

Anyway, what will they expect me to look like and be? I have no idea. I guess I will just have to wait and see. Its been a long time since we used to go shopping at the mall on Friday nights to check out guys.

No I don't care

Sunday is my cancerversary. I don't really care. At all. What would I be celebrating? Still being here after breast cancer. Not really. I probably should celebrate my 34th cancerversary from thyroid cancer. But I don't either. I have considered that one but never have done much.

I can understand why some people want to celebrate being around after their lives were turned upside down. I have a friend who is I believe 8 years out from stage IIIC lymphoma. I have another friend who will be 34 or so years out from stage IV ovarian cancer. Those probably deserve more celebrating but I am not even sure either of them do.

What I do prefer is to celebrate my 37th birthday (again - I was 29 for a long time but have since switched to 37) this year. My life is not defined by my health but by me. In fact, I cannot let my life be defined by my health. I am so much more than that.

Genetic Testing's Downside

Finally someone did a study about a lot of genetic tests. And the results were not that good.

Allow me to state that I have never been a fan of genetic tests. I am not someone who is going to go out and have any genetic tests, any more than I am going to get my palm read or see a fortune teller. I have no desire whatsoever to find out what could be in store for me. I have enough going on currently without worrying about the future as well.

The thing about genetic tests is they tell you if you have a gene mutation or variant that could show an  increased or decreased risk for something. Some of the things could be minor, like getting gray hair younger (like my siblings) or a propensity for wrinkles. Some things could be major, like cancer or a heart condition.

Genetic tests tell you what you could have happen. But they do not tell you what the risk is. The only way to know the risk is for test results compared to other test results and their health issues. The data must be shared. But not all labs share their data.

"...  not all gene mutations, or variants, are equal. Some raise risk a lot, others just a little, and some not at all. Most are of unknown significance - a quandary for doctors and patients alike. And most variants are uncommon, making it even tougher to figure out which ones matter and how much.

To solve these mysteries and give patients better information, the U.S. government several years ago helped form and fund ClinVar, a database for researchers around the world to pool gene findings, coded to keep patients' identities confidential. More than 300 labs contribute to it, including universities such as Harvard and Emory and some private companies such as Ambry Genetics and GeneDX."

"...So far, the project has tracked more than 172,000 variants in nearly 23,000 genes, a small portion of the millions known to exist but some of the more common ones that have been identified.

More than 118,000 of these variants have an effect on the risk for a disease - and 11 percent have been analyzed by more than one lab so results can be compared. In 17 percent of those cases, labs interpreted the findings differently, as either raising the risk of a disease, having no effect on it or having an unknown effect.

At least 415 gene variants now have different interpretations that could sway a medical decision, such as whether to have healthy breasts or ovaries removed to lower the risk of cancer, or to get a medical device such as an implanted defibrillator to cut the risk of sudden cardiac death."

The first problem is not all labs interpret the results the same way and then the problem of what to do about them surfaces. Data sharing will help with these problems as more data is shared and compared.

Aging or health issues

Today I volunteer at a local conference. I have to be there shortly so need to leave asap (and its 6:13 AM as I write this). Its an annual conference for my professional life. I have volunteered there for several years. Maybe 7, maybe 9? I can't remember any more.

But this will be the last year. Getting up so early is now difficult for me. And being on my feet for a few hours isn't going to work either. Usually I stay for most of the conference but this year, I'll probably head home after the morning keynote speech.

Yesterday I had a doctor's appointment as a follow up for a test where I had not so good results. The doctor said some of the issues I experience could just be part of aging. But I have more tests to confirm this.

So my question for myself is aging part of my problems these days or are my limitations due to health issues? I always blame my health issues for any problems I have and not aging. I don't consider myself as old, but I could join AARP at this point. The majority of my health diagnoses have been accompanied by 'you are too young for this'. Maybe my age is catching up to my health.

The imperfect mammogram

Sometimes I start to think, which can be a dangerous proposition and something that my husband believes I should not do too frequently. One thought that has wandered through my brain is that we make assumptions about mammograms and other medical tests and procedures. I also found an article that agrees with me.

To give a little history, I had a benign fibroadenoma at the age of 23, which was three years after my thyroid cancer, and have had mammograms since then. Fibroadenomas are benign and common in younger women but can put a woman at 1.5 or 2x the risk of breast cancer later on. (A little factoid I just learned and wish I had known decades ago.)

But after decades of mammograms, and breast cancer and a later fibroadenoma at the end of chemo, I can tell you I never felt they so wonderful or perfect. My first fibroadenoma was found by me and confirmed by a mammogram (my first). My breast cancer was found by a mammogram. My second fibroadenoma was found by an MRI and grew during chemo.

There has been a lot of disagreement, false information, arguments, stories about mammograms saving lives, and more in recent years. Komen says mammograms save lives (as her sister wanted - but that's another story). The AMA, ACS, and other groups have their own opinions.

But lets take a step back, as this writer describes, and think about the real mammogram numbers and results. Some cancers are missed on mammograms. Sometimes mammograms find benign conditions. These can lead to more testing or procedures or even over treatment.

First, no medical procedure, test, surgery or whatever is perfect. There is always a margin of error. Strep tests are good 99% of the time, flu shots don't prevent all cases of the flu, any surgery could have complications. Second, as patients we make assumptions that a medical whatever is going to save us. A doctor will come along and be able to save us from whatever. They do their best but research is always on going to learn more.

Screening for cancer can save lives but none of the tests I know of are perfect. A high number on a test can be a sign of cancer but it could be caused by something else. I am all for cancer screenings but we can't rely on them completely. We need to accept that medicine is not perfect but it is all we have.

A weekend away

I took advantage of the long weekend and went camping with my husband and my brother and his four kids. I resisted the urge to bring technology with me and only brought my phone, and then killed the battery. So I was low tech.

Now we are back. I have 190 !!!!!!!!!!!!!!! emails downloading as I type and am facing piles of laundry. (And a nasty bowl of spinach that I left in the microwave instead of bringing it along to reheat for Friday night's dinner). It was nice to get away and hang out with my nieces and nephews.

But I am glad to be home so I can sleep in a real bed and then, damn, I have to go to work tomorrow and have a doctor appointment. Triple damn.