Categories
Ethical Considerations Living Kidney Donor

Tax Deductions Are Not the Answer

I ran across an article today about a bill introduced in New Jersey’s Senate allowing living organ donors to take a tax deduction of up to $10,000 for living donor related expenses. The article, written by Carly Q. Romalino, contains a quote by John Green, community relations director with Gift of Life Donor program:

“Altruistic donors, they can really help decrease the number of people on the waiting list especially in New Jersey.”

Yep, that’s right. This bill is solely meant to motivate the public to kick out a kidney to a complete stranger.

Did I mention this person is employed by the state’s Organ Procurement Organization, which is NOT ALLOWED BY FEDERAL POLICY to meddle into the affairs of living donation? Yet here we are.

 

And the Senator who proposed this bill – Fred Madden – he admits:  Through his work on the health committee…he’s noticed there is some consistency “that the donor goes through a tougher transition when they donate the organ.”

Let me get this straight: he knows that living donation isn’t a skipping-merrily-into-the-sunset proposition, yet instead of proposing a bill that might ‘ease the transition*’ (whatever that mans), he wants to sideways, backways encourage people to do it anyway by subtly bribing them?

Shameful.

 

If you’d like to contact Senator Fred Madden and encourage him to use his position to ensure living kidney donors are protected and respected, here’s his contact information:

District Office: 129 Johnson Road, Suite 1, Turnersville, NJ 08012 (856) 232-6700

District Office: 1031 Little Gloucester Rd., Suite 3, Blackwood, NJ 08012 (856) 401-3073

 

*Support services, aftercare, mental health provisions… Oh, I know a REAL and ACTUAL psychosocial evaluation intended to prevent harm to living donors instead of the current “You know this is major surgery, right? You know it’s illegal to take payment, right?” pathetic excuse we have now.

Categories
Advocacy

Should Publicly Funded Research Be Available to the Public For Free?

This may come as a shock to many, but a significant amount of research conducted and subsequently published is funded by (gasp) – the federal government.

That’s right, what the free market idiots don’t want you to know that is that the private sector isn’t interested in theories and hypothesis and “what if’s” and “could we do this better?”; they’re only interested in short-term profit. If you don’t believe me, refer to this article, and this one, and even this one about Big Pharm’s marketing budget, R&D; budget, and oh yeah, profits and executive compensation.

The feds, meanwhile, hold the perspective the some things are more important than profit, that knowledge and information for future use is valuable.

Some examples: nuclear energy (yeah, the bomb thing is questionable), the entirety of NASA, disease progression and transmission (smallpox, syphillis), the internet (!) ….

Here’s what the National Institute of Health (NIH) funded just last year: less invasive breast cancer treatment, early HIV treatment prevents transmission, less medication for wheezing preschoolers, insulin nasal spray shows promise for alzheimer’s, etc etc.

Currently, this publicly funded research must be accessible to the public for free. Makes sense, right? We, the taxpayers foot the bill, so we get to see the end product.

Apparently not everyone agrees, or so says “The Research Works Act” floating its way through the House. Sadly, but not surprisingly, this bill is sponsored by the publishers of academic journals, who charge $15 or $30 or more for access to ONE article in their periodical.

“We need to protect our brand,” They whine, “Well, and our profit margin too.”

Except that their subscription fees ($170 per year for the New England Journal of Medicine; $223 for individuals and $1504 for institutions for Cell) are mostly paid with PUBLIC FUNDS. Yeah, you know, all those public COLLEGES and UNIVERSITIES, and the public and not for profit HOSPITALS and LIBRARIES.

It’s tempting to shrug about something like this, but think about it: where do you think all those reporters and writers find out about the studies they write their stories about? Where do you think scientific and advances in social policy come from?

That’s right, the sharing of (and building upon) prior research results.

And if that doesn’t convince you, understand this: if information was tamped down the way these publishers would like, there wouldn’t be a Living Donor 101 or Living Donors Are People Too.

Read Michael Eisen’s op-ed piece in the New York Times.

Categories
Potpourri

Court Overturns Gene Patenting Case

From the NY Times:

United States District Court Judge Robert W. Sweet issued a 152-page decision, which invalidated seven patents related to the genes BRCA1 and BRCA2, whose mutations have been associated with cancer.

The American Civil Liberties Union and the Public Patent Foundation at the Benjamin N. Cardozo School of Law in New York joined with individual patients and medical organizations to challenge the patents last May: they argued that genes, products of nature, fall outside of the realm of things that can be patented.

Judge Sweet, however, ruled that the patents were “improperly granted” because they involved a “law of nature.” He said that many critics of gene patents considered the idea that isolating a gene made it patentable “a ‘lawyer’s trick’ that circumvents the prohibition on the direct patenting of the DNA in our bodies but which, in practice, reaches the same result.”

Myriad Genetics sells a test costing more than $3,000 that looks for mutations in the two genes to determine if a woman is at a high risk of getting breast cancer and ovarian cancer. Plaintiffs in the case had said Myriad’s monopoly on the test, conferred by the gene patents, kept prices high and prevented women from getting a confirmatory test from another laboratory.

Chris Hansen, an A.C.L.U. staff lawyer, said: “The human genome, like the structure of blood, air or water, was discovered, not created. There is an endless amount of information on genes that begs for further discovery, and gene patents put up unacceptable barriers to the free exchange of ideas.”

***

My thoughts:

The patenting of genes originates from a 1979 Supreme Court ruling involving a genetically-engineered bacterium used to clean up oil spills. The key word here is ‘genetically-engineered’ aka created. The genes patented in this case (and in most every other situation) already exist on the genome and are simply uncovered by scientists/researchers. Patents are for items that are invented, and naturally ocurring genes do not apply.

Myriad Genetic and other corps have argued that not allowing them to patent genes would ‘stifle’ inovation. In truth, it allowed them to extort $3000 grand from consumers to test for the possibly life-threatening gene, and prohibited anyone else from creating a similar test. Who cares about women’s health when there’s money to be made, right?

Update: Statement from National Society of Genetic Counselors

Categories
Advocacy

Two Living Donor-related bills in Congress

* A $5000 tax credit for unreimbursed costs associated with living donation, including lost wages, has been introduced in the House of Representatives (HR 218). This would provide much-needed relief for those who give the Gift of Life by helping to defray costs associated with living donation, such as travel and lost time at work.

* Another bill (HR 2776) would guarantee job protections under the Family Medical Leave Act for those who must take time off from work to be a living donor. While this is unpaid leave, it ensures that the living donor can take time off and the job will be available when they return to work.

Categories
Ethical Considerations

Disturbing amendments to the Baucus Health Bill

http://newsweek.washingtonpost.com/onfaith/panelists/herb_silverman/2009/09/health_funding_for_evidence_not_faith.html?hpid=talkbox1

Excerpts:

Under current law, religious people who object to medical care may have some “spiritual care” covered by Medicare and Medicaid, including reimbursement for payments that Christian Scientists make to members of the Church who pray for them when they are ill. Numerous children have died while receiving this “spiritual care,” when modern science could easily have saved their lives. The Hatch-Kerry Amendment [Senators Orrin Hatch (R-Utah) and John Kerry (D-Mass.)] would make a bad situation even worse. It would expand such practices and require all private and public health plans to cover “spiritual care,” whether or not the individual has religious objections to medical care.

Let me get this straight – current health care plans can choose NOT to cover mental health services but they’re paying for prayer?

We also oppose an amendment by Senator Mike Enzi (R-Wyoming), which would allow doctors to deny patients any care or information that violates the doctor’s religious beliefs. This violation of medical ethics is labeled with the Orwellian term “Conscience Clause.” This amendment cruelly places the religious beliefs of practitioners such as pharmacists above the medical needs of patients.

The Hippocratic Oath clearly says “Do No Harm” not “Dictate to Thy Patient His or Her Care According to Your Religious Beliefs”

It threatens access to contraception, end-of-life care, HIV care, and any other care to which a health provider objects. It would also allow health care providers to withhold information from patients about their health care status and their treatment options, in violation of informed consent and ethical standards.

And why am I not surprised by the following:

Lastly, we object to an amendment by Senator Orrin Hatch (R-Utah), requesting that funding for Title V abstinence-only-until-marriage programs be restored. Congress has already wasted $1.5 billion on such programs since 1996, despite the fact that there is no evidence that abstinence-only programs have been effective in stopping or even delaying teen sex. Numerous studies, including a 10-year government-funded evaluation of the Title V abstinence-only program, found that these programs do not delay sexual initiation and have no beneficial impact on young people’s sexual behavior.

Yes, let’s continue to waste tax money on programs that DO NOT WORK just to curry favor with the segment of our population that would rather keep its young people ignorant. Brilliant.