Wednesday, February 29, 2012

Happy Rare Disease Day!

Today is Rare Disease Day 2012! Who knew there was a special day set aside just for talking about rare diseases? I only just found out about it minutes ago, and just in time to celebrate.

In honor of Rare Disease Day, I decided to check out the Rare Disease Database to make sure my rare disease was listed... and it is! Gilbert Syndrome's listing is there, and fairly accurate:
Gilbert syndrome is a mild genetic liver disorder in which the body cannot properly process bilirubin, a yellowish waste product that is formed when the liver breaks down old or worn out red blood cells (hemolysis). Individuals with Gilbert syndrome have elevated levels of bilirubin (hyperbilirubinemia), which occurs because they have a reduced level of a specific liver enzyme required for elimination of bilirubin. ... Bilirubin levels may increase following stress, exertion, dehydration, alcohol consumption, fasting, and/or infection.
I did learn some other names for Gilbert's, including, Unconjugated Benign Bilirubinemia, Meulengracht's Disease, and Familial Nonhemolytic Jaundice. My personal nickname for it - Semi-Chronic Fatigue Syndrome - has not yet made the list. I call it that, as when my bilirubin levels rise, I feel it more as fatigue (and often hunger) without exhibiting too many outwardly visible signs of jaundice. It also makes my urine look like thick orange paint. Aren't you glad you asked?

Unfortunately, according to the Patient Organizations Database, there is not yet an organization dedicated solely to Gilbert's, although there are a few general liver and genetic disease organizations that would gladly accept me as a member.

So, how will you celebrate Rare Disease Day 2012? Visit for fun party ideas, or maybe some serious life saving information.

Wednesday, February 08, 2012

When Wars Collide

We Americans love to declare war on whatever social problem we feel is of vital importance - and sometimes we assume that our political nemesis has declared the war on us. At any given time, depending on who you ask, any number of wars may be raging. From the religious right's point of view, one of those is the War on Christianity. From the progressive left's point of view, a big one is the War on Women's Health.

Over the last couple of weeks we've watched as these two wars met head on following the Obama administration's refusal to grant religious employers an exemption to new rules requiring that health insurance plans include coverage for birth control and other reproductive health services. When we talk about religious employers here, we're mostly referring to nonprofit social service organizations, universities, and hospitals: organizations that serve the general public (not just co-religionists), and who employ people of all faiths and beliefs.

To the right, this is a violation of these groups' (primarily Catholic) fundamental right to religious freedom, by forcing them to pay for a product (contraception at a minimum, abortion at the extreme) that goes against their beliefs.

To the left, the denial of this coverage violates the employee's (mostly women) access to a full range of health care options, and forces them to abide by their employer's religious restrictions - whether or not they are of the same religion.

Whose rights are more important? The employee's rights to make their own private health care decisions with their doctor's advice, or the employer's rights to not have to support practices they don't believe in?

I believe that the employee's rights have to win out. Not only for the access to care, but also for the right to privacy. Under HIPPA, we all have the right to privacy regarding our medical records, including not having to share our health care decisions with our employer.

But the employer is paying for it, right? Well, let's take a look at that a little closer. Those against the administration's decision are saying that religious organizations will "be forced to pay for contraception and abortions." But that's simply not true. Employers pay for health insurance only. What the employee does with that health insurance is their own business.

Saying that the employer has the right to dictate health care choices made by an employee is the same as saying the employer has the right to dictate what the employee may or may not purchase with their paycheck.

Do you need to ask your boss permission before making any purchases for your home? It's the employer's money after all, isn't it? Of course not! Once they pay you, it's your money, and your decision how it's spent.

Same with health insurance. Once the employer purchases it - as part of your compensation package for your labor - what you do with it is between you and your doctor only. At least, it should be that way.

Unfortunately, this being an election year, too much will be made of this perfectly reasonable decision by the administration, and they may be forced into a compromise position. While the compromise may temporarily appease those on the religious right, it will certainly be a set-back for women's access to health, and blow to privacy for us all.

Thursday, February 02, 2012

Freedom of the Press? We're #47!

Media watchdog organization, Reporters Without Borders, has just released their World Press Freedom Index - a tracking of several indicators of press freedom - and the United Sates has fallen 27 points since their last survey; from #20 to #47. That puts us behind Slovakia, El Salvador, and Ghana, but still (slightly) ahead of Latvia and Haiti.

Much of the reason for the sharp drop this year is attributed to local over-reaction to the Occupy movement, with mayors and police chiefs nationwide having journalists carried away along with demonstrators. The great irony in all this is that American journalists now have greater freedom in covering protests overseas than they do at home.

But beyond last fall's local yahoos trying to make their city streets safe for holiday shoppers, the crackdown on a free press in America continued yesterday in Washington, DC, at a hearing of the House Science Committee, where Oscar-nominated documentary director, Josh Fox, was arrested for trying to film part of the hearing:

As Fox says in this interview, "The First Amendment to the Constitution states explicitly 'Congress shall make no law... that infringes on the Freedom of the Press.'" Is Congress exempt from the Constitution now, or have we just decided that we no longer need a free press?

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