One of my regular readers from Germany, Thomas, often forwards me links to myeloma research he finds online. Thomas is still a young man with a wife and kids. He is on a quest to identify the most promising research threads. Buying an extra two or three years doesn’t work for Thomas. He wants it all. Thomas wants a cure.
Quest might be a bit mild. Thomas is obsessed. And why not? None of us want to die. I understand why younger patients like Thomas feel especially frustrated. After all, someone in their late 60’s or early 70’s might be satisfied with buying a few more years. A ten year life extension means a lot more to a 74 year old who is approaching the end of his or her life, than it does to someone in their 30’s or 40’s who feel their lives will be cut tragically short by cancer.
At age 54, I fall somewhere in the middle. Regardless, I get frustrated too! Let me share an e-mail Thomas sent me a week ago on the subject:
I want to contribute something to the discussion in your blog about frustrating research results.
It is not so different from that story about bone marrow instruments. But it’s about scientific fame.
For example I got in contact with a doc from a cancer research centre. They made findings about myeloma resistance:
Great findings. But do you think they’re brought to the bedside? No. The results are just there but nobody uses them. That’s enough for scientists. That’s printed paper. And why pressing this into useful medication?
We need an organization looking for such findings and putting pressure on development. Intelligent pressure! We don’t need tons of paper from IMF, just a good website. (IMFs site is unstructured and packed with old information).
Have a nice Sunday!
When I asked for permission to post his e-mail, I also asked if Thomas had anything to add. His response:
It can be compared with a highway. There are certainly some important roads but too many of them are dead ends. Interesting findings from 2009? God damn- why interesting, when there’s no follow up? So much energy lost…
Researchers should clearly identify the importance of findings. Should we follow this research or not? Everything that doesn’t help us (move toward) our milestones gets a bad rating. Promising or interesting means nothing. Hey–you’re scientists, not artists. Let us become more precise and define promising. Dead end or a future main road?
That is what fundraising money and patient lobbyists could do. Give them focus. Set milestones. Ask for outcomes. Ask again. Precise, no blabla. As Bart Barlogie pointed out in an interview about ASH 2010: “it is a chaotic meeting.” Chaos is the opposite of clinical success.
IMF should work out a research road map together with the other leading institutes (as MMRC) but international and better. Work for the bedside, not for the other smart researchers and for your halo-effect. And act responsible with your network and money. IMF has no philanthropic job. Fight for the cure as you write in your headline.
Oh man, as I understand more and more that myeloma is just a business, I get angry. But who cares? Again – a Bill Gates with myeloma would help.
Have a nice week-
Thanks, Thomas! But how do you really feel about it? It is refreshing to hear “friendly decent.” Thomas makes some interesting points–and his English is pretty good for a second language, don’t you think?
Feel good and keep smiling! Pat