Stigma sticks to the persons stigmatized. And sure enough, we are stuck. Every time we repeat the word, we reinforce it.
Here is an idea. It's not stigma. It is prejudice and internalized oppression.
We gotta do something new, people. We're dying out here.
Treatment For Mental Illness -- The Streets Or Jail
Ever since John Kennedy promised us more humane, community-based treatment for mental illness, we have been living on the streets. Somebody with serious mental illness is four times more likely to be homeless than somebody without.
Does anybody out there live in a state where funding for mental health services is not being slashed? Wasn't being slashed even before the last elections?
Now that we are talking money, how is this for a reality check on what we are worth -- from John McManamy's blog Knowledge Is Necessity:
In 2009, the NIH allocated $3.19 billion for HIV/AIDS research. By contrast, research for depression (including bipolar) was a mere $402 million. Million, not billion. These are ratios that have held fairly steady over the years. Approximately 1.5 million individuals in the US are affected by HIV or AIDS. About 19 million in the US in any given year deal with depression or bipolar. That translates to the NIH spending $2,013 per patient for HIV/AIDS research vs a paltry $21 per patient for depression and bipolar. Putting it another way, for every dollar the NIH invests in an HIV/AIDS patient, depression and bipolar patients get one penny. [emphasis added]
Kinda puts things in perspective.
Funding By Death
But AIDS is fatal. What about spending per death?
The number of deaths of persons with an AIDS diagnosis has stabilized in recent years at around 17-18,000 per year. (Deaths of persons with an AIDS diagnosis may be due to any cause). Since the beginning of the epidemic, an estimated 597,499 people with AIDS have died in the U.S. Again, that does not mean they died of AIDS. The figure includes heart attacks, cancer, accidents, suicide, etc.
In contrast, the Center for Disease Control reports that 34,598 people died by suicide in 2007. We are pushing 900,000 deaths by suicide in the same period as the 600,000 people with AIDS who died for whatever reason.
But people with AIDS are now living longer. Today, for every death of a person who has AIDS, two people die by suicide. Far from stabilizing, the suicide rate has been rising since 1995. [Side note: so much for that claim that increased antidepressant use caused the rate to go down. There are more of us on them now than ever, and more of us dying anyhow.]
Depression is not the cause of suicide in all cases. Research indicates that 90% of those who die by suicide have a mental illness. That 70% have a mood disorder is a low ball estimate. But that would yield 24,218 deaths by suicide among persons with mood disorders.
So the NIH spends $for 187,647/year for every death of a person with AIDS and $16,599/year for every death of a person with a mood disorder.
Oh, it's not so bad after all. If we look at death rates, the disparity is down to $11 for somebody who has AIDS and dies by any cause to $1 for somebody who dies from depression.
Feelin' all warm and gooey inside now.
No Political Price To Pay
Here is the politics at work.
The Ryan White Act was enacted in 1990 and named after a twelve-year-old who was kicked out of school because he had HIV/AIDS. The act provides funding of last resort for poor people with HIV/AIDS and technical assistance to state and local organizations dealing with HIV/AIDS. This is on top of the NIH research funding.
The money is not much, just over $2,000,000. But it has held its own in the last decade, with modest increases every year until 2010. Up for expiration in 2009, it was renewed by unanimous vote in the Senate and 408 aye/9 nay/15 abstaining in the House.
Now I am totally in favor of the Ryan White Act and the amount is stingy. But I ask you to consider, do people with mental illness have anything like the Ryan White Act? And can you imagine a legislator who thinks there will be any political price to pay for the cuts he/she is voting right now to services for people with mental illness, or for teaching laws enforcement how to handle mental health emergencies?
We could run the numbers for other diseases. Breast cancer would reveal similar results. Please, please understand me. We are not on different sides here. The AIDS example is especially valuable because we can draw lessons from what AIDS activists have accomplished.
Stigma Busting Is A Bust
The problem is that people don't think of mental illness as real illness, right? The solution is more education about the biological basis for mental illness, right?
No, not so much. Researchers at Indiana University and Columbia University examined changes in understanding and attitudes in the US between 1996 and 2006. Education has indeed increased understanding that mental illness is a biological condition. 54% of people knew that about depression in 1996, 67% in 2006. Let's give the pharmaceutical companies some credit for their share, probably the lion's share of that change.
On the other hand, do they want to work with, socialize with, marry or live next door to us? Nope. Those numbers did not budge in the same time frame. More telling for the task of designing stigma-busting strategies, there is no difference in attitudes between those who know that mental illness is biological, and those who do not.
In fact, those who understand the neurobiological basis for depression are more likely than those who do not to think that we pose a danger to them.
I'll kill 'em. I swear, I'll kill 'em. Just as soon as I can get out of bed.
What we are doing against stigma -- it's not working, folks.
Evidence-Based Stigma Busting
A study from the University of Kent in Cambridge, UK uncovered one flaw in typical stigma-busting efforts. To bottom line it, how the listener responds depends on who the speaker is.
When allies (such as doctors or family members) make positive statements about people with mental illness, they are less credible than when people who have a mental illness speak for ourselves. They is a word that doesn't cut it in stigma-busting, regardless of intention or attempt at sensitivity. The authors cite previous research regarding other stigmatized groups showing that positive statements about them can be perceived as patronizing.
This Is Good News
1. We were never worth much and now are worth less.
No, I mean it. This is good news. As my therapist used to say, The facts are friendly. These are the facts, and they will be our ammunition.
2. We can do better. In fact, the bar is set pretty low.
3. We have others, even among us, who have fought prior battles and can point the way.
Next week we take advocacy to the next level.
photo from La Brea Tar Pits by 3scandal0 and in the public domain
A psychiatrist friend directed me to PharmedOut.org, a source for all things seedy in medical research, medical education, and the sale of pharmaceuticals. I don't need to repeat what you already know about ghost writing research articles, how pharma gets around restrictions on bribes by paying doctors to "teach," the sample scam, etc. I am not spending time this week on what I didn't know until now about the editorial/advertising relationship in medical journals, or that the drug companies are the major subscribers to these journals and give them to doctors, and are the major purchaser of reprints (at inflated prices) to be distributed by drug reps to doctors. But it is more of the same. Just thought I'd mention it.
We go round and round about this. Still, every research article ends with a cry for more funding, which will come from just one source. Every doctor gets everything he/she knows about medications ultimately from just one source. Every friend and family member who wants to help repeats the message taught by one source -- Keep trying. Translation: keep buying drugs.