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Chronic Myeloid Leukemia (CML) was the diagnosis I received on November 1, 2005. I went into the clinic three months earlier because of a tightness in my chest, left side, resulting even from a short walk out to my car. Then the week before diagnosis I went in because of a strange bulge in the left side of my abdomen, felt when lying in bed on my back. Turned out to be a rather large spleen, later measured at 11cm below the rib cage.

Since then, my family and I have been through some trying times. And as a Naval Officer stationed overseas in the UK and with family and friends living throughout the world, including the United States, United Kingdom, Ireland, Germany, Japan and Australia, I decided early on that it would be easier to update everyone via a blog than by email or phone.

I tried, and resisted, Gleevec. I also tried Sprycel but I proved intolerant to it because my counts dropped as soon as I took more than 50mg daily (standard is 100 to 140 mg daily). So I turned to a bone marrow transplant, which I underwent November 31, 2007 at the Fred Hutchinson Cancer Research Center in Seattle, WA. I have since been dealing with chronic graft versus host disease (GVHD) issues with my GI tract (resolved), eyes, mouth, and now my lungs. The lung problem is pretty bad as I hve been diagnosed with bronchial obliterans and now have only 42 percent lung function and am on oxygen a great deal of the time.

But not to fear; I am hanging in there, keeping my spirits up and continuing with my life. Through this blog, people have followed my treatment plans through success and failures, various types of medical appointments and procedures, my fluctuating counts, etc. Besides information detailing my own experiences, I also try to include general aspects of CML, various forms of treatment and the experiences of a stem cell transplant.

Thursday, June 25, 2009

Government awards patents for Genes, stiffling research

My mother gave me a USA Today newspaper clipping from June 16, 2009 of the following articles, which we thought were interesteding. This is the view of USA Today and the opposing view will be on my following posting:

Our view: Private interests shouldn’t control rights to features of natural world.

In 2006, Genae Girard, then 36, was diagnosed with Stage 2 breast cancer. She had a lumpectomy and chemotherapy. Then she underwent testing for mutations in the BRCA1 and BRCA2 genes linked to breast and ovarian cancer. Girard tested positive for BRCA2 and elected to have a double mastectomy and then a hysterectomy. As she made these wrenching decisions about her health, she collected second opinions at every step of the way except one — the BRCA test.

The reason: One company, Utah-based Myriad Genetics, owns the patent to the BRCA genes.

(Girard: Couldn’t get second opinion on a cancer test./ACLU)

Say what? Yes, the U.S. government grants patents to DNA sequences, the stuff of life. About 20% of the human genome has been patented.

One consequence of such patents is that only Myriad can test for the BRCA mutations. So, no second opinions. Plus, without competition, Myriad can charge more for tests. At more than $3,000, the tests are prohibitively expensive for many women, and not all insurance companies cover them.

Pharmaceutical companies have long used patent protection to recoup the costs of investment and to make initial profits on drugs. Fair enough. Unlike drugs, though, genes are features of the natural world. The biotech industry argues that by taking genes out of the body and isolating them, scientists are creating something that does not occur in nature and therefore can be patented. This, however, is like arguing that gold can be patented when it has been taken out of a mountain because it's no longer "in nature."

The problem began with a 1980 Supreme Court ruling on the patenting of biological organisms. Since 1982, based on a questionable interpretation of that decision, the U.S. Patent and Trademark Office has granted tens of thousands of patents for human genes and gene-related products.

Many of the patent holders allow virtually unrestricted research. But a few companies are aggressive about prohibiting others from profiting from research on their patented genes. That inhibits scientific inquiry.

Efforts to change the situation are underway in the courts and Congress. The American Civil Liberties Union, along with a non-profit organization, filed a lawsuit last month that challenges the patenting of the BRCA genes. On Capitol Hill, Rep. Xavier Becerra, D-Calif., is promoting legislation to bar gene patenting, which, he says, is "equivalent to patenting water, air, birds or diamonds."

It is possible that other solutions exist, short of a complete ban. The scientific world tends to be one of collaboration, not competition. But without strict curbs, for-profit companies such as Myriad — which declined to provide an opposing view to this editorial — too readily can use patents to slow and restrict research as they maximize revenue. (There might be "myriad dollars to be made in Myriad," CNBC's Jim Cramer said on his stock-picking show last week.)

Even though Girard has taken the most drastic steps to prevent her cancer from spreading or returning, the BRCA2 gene runs in her family. If one company continues to have a lock on it, that makes it more difficult to achieve Girard's wish: to make it easier for others, including her niece who might also carry the gene, to make better informed decisions about their own health.

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