Mental Health and the Patient Point of View:
More High-Quality Stories Needed

I am thrilled that later today, Martha Roberts’ post on her own experience taking medication for mental illness, will run here. I first came across her post through a tweet from Ben Goldacre, author of Bad Pharma. It’s nice to know that he has not oversimplified the “bad pharma” argument into this meme: all drugs are inevitably bad for mental illness, overused, and inappropriate. Yes, there are huge problems with selective publishing of clinical trials data, withholding negative drug trials, and more. But mental health and mental illness are a lot more nuanced than a simple meme.

A lot more ink needs to be written about mental illnesses from the patient point of view, that show the real-life hurdles of people unfairly stigmatized, unemployed, or under-employed. I hope that this upcoming post (I’ll link to it here) is the first of many more.

If you have something to say about this, use the comments, or if you have a longer contribution, email me at patientpov “at” gmail dot com.

Alzheimer’s Disease Issues 2011 Fellowship Begins

I am in Washington at the National Press Foundation’s Alzheimer’s Disease Issues 2011 Fellowship with about 15 other journalists. The program runs through Wednesday. Today’s session was a half-day, with presentations by Richard Jackson, director of the Global Aging Initiative, Center for Strategic and International Studies, and Harry Johns, President and CEO of the Alzheimer’s Association.

Global Age Shift

Trends that struck me in Jackson’s global aging presentation were as follows:
1.    Falling fertility is near or beneath replacement in countries, including China, Brazil, Mexico, and Chile. In Turkey, Iran, North Africa, and Indonesia, fertility is also falling fast.
2.    Rising life expectancy is bringing added financial burdens that few developed countries can handle.
3.    As the population ages, productivity in the workforce goes down and growth slows.
4.    Savings and investment drop.
5.    As a result, families get smaller and people become more risk averse. Smaller families may find it more difficult to socialize their children to care for elders as they did traditionally.
6.    A rising share of the population does not have a child to look after them, which in my mind, puts more elders at risk of poverty in old age.
7.    Right now, Germany and Sweden look the best in terms of funded retirement savings. Germany and Japan both have mandatory long term care insurance deducted from income.
8.    There have been Draconian cuts in pensions worldwide.
9.    However, Germany stands out as one country where you don’t have to become poor to get old age/long term care.

Planning for Alzheimer’s Disease Burden in the United States

Turning to the United States, Johns compared the stigma surrounding Alzheimer’s to where cancer was in 1961, when many doctors did not tell patients about a diagnosis of cancer. He pointed out that available treatments are at best “”symptom improvers’ that don’t work for everyone and when they work, they may not work for long.”

Legislative changes at the federal level are promising, including the National Alzheimer’s Project Act (NAPA), which passed in December, as part of the lame duck session in Congress. It requires developing a strategic plan for Alzheimer’s in America, according to Johns. As part of the “Welcome to Medicare exam,” including an annual cognitive measure will be added to the annual physical.

The HOPE (Health Outcomes, Planning, and Education) for Alzheimer’s Act (H.R.5926), sponsored by the Alzheimer’s Association, is currently making the rounds in Washington. It is endorsed broadly, with bipartisan support. has a petition on the web  urging the public to sign it and “Stand with the Alzheimer’s Association and urge members of Congress to support” it.

According to Johns, the Hope for Alzheimer’s Act will encourage discussion about Alzheimer’s, promote charting in the medical record, and advance discussion about Alzheimer’s and care.

The petition states: “Too many of America’s baby boomers will spend their retirement years either living with Alzheimer’s disease or caring for someone who has it. Even worse, many of the estimated 5.4 million Americans with Alzheimer’s disease do not have access to a formal diagnosis or care planning services preventing them from planning for the future. As we work for Alzheimer’s research, we must ensure individuals living with the disease have access to services that can improve their quality of life today.”

This is the second time that the Foundation has run this event, which is underwritten by Pfizer,the Lawrence B. Taishoff Endowment, and the National Press Foundation Program Fund. A few journalists and bloggers have criticized the program in the past because of Pfizer money. Pfizer is in the Alzheimer’s market so anyone could argue that in supporting an educational program on Alzheimer’s, journalists who cover Alzheimer’s information gained at the meeting, could use that information to enhance Pfizer’s market share. That’s why I am being up front about this here. According to NPF President Bob Meyers, Pfizer has absolutely no editorial impact on the program, but before the program, Pfizer receives a proposed agenda and budget.

I don’t know whether I’ll have the energy to blog every day of this meeting (it’s Alzheimer’s all day for 2.5 days ahead), but if you have any concerns about Alzheimer’s patient care, caregiver issues, or funding, please point them out in the comments.

National Association of People With AIDS Condemns
New York Post’s Violation of HIV Status Privacy in #DSK Story

This morning, I received an email from Frank J. Oldham, Jr., President and CEO of the National Association of People With AIDS, attacking the New York Post for violating HIV status privacy of the maid, who accused former IMF president Dominique Strauss-Kahn of forced oral sex and attempted rape. Oldham has been an advocate for people living with HIV and AIDS for thirty years.

The letter, in its entirety, is reproduced with permission from NAPWA. Please circulate it widely on twitter, Facebook, email, whatever.

May 20, 2011 – 11:47am
A message from Frank J. Oldham, Jr.

This week the New York Post reported – rightly or wrongly – that the woman accusing former IMF president Dominique Strauss-Kahn of forced oral sex and attempted rape lives in housing for people living with HIV. The Post owe the victimized woman an apology, and they owe their readers education, not hysteria.

The biggest – and very welcome – HIV news this month is the early release of the HPTN 052 trial results, proving once and for all that bringing people with HIV into treatment with anti-HIV drugs as early as possible reduces the number of new infections.

Frank Oldham, Jr.

Frank Oldham, Jr.

However encouraging those results are, they do not mean that the epidemic is over. It will be years, if ever, before all Americans living with HIV come into voluntary testing and voluntary treatment, protecting their own health and reducing their chance of infecting others. We will never reach that goal until we overcome everything that makes people afraid to know their status: HIV stigma, HIV hysteria, and plain HIV ignorance.

We therefore condemn the Post’s report this week that the alleged sexual assault victim lives in housing for people with HIV operated by our good friends and colleagues Harlem United. Whatever their intention, the Post have triggered a flood of messages that promote the very stigma, hysteria, and ignorance that keep the HIV epidemic growing.

Press around the world are now fixated on whether the man who is charged with forcing oral sex upon her has become an HIV “victim.” Women living with HIV will be even more reluctant than before to come forward when sexually assaulted. The Post’s readers are having their worst prejudices and fears about HIV and people who live with it confirmed.

The Post’s coverage reinforces the uninformed and false belief that receiving oral sex from a person living with HIV puts one at high risk of becoming infected – in fact, very few new HIV infections happen this way.

Worst of all, the Post’s coverage not only violated the alleged victim’s privacy, it missed an opportunity to educate. Housing programs like Harlem United’s give poor people living with HIV a safe and stable place to live, stay in contact with the support services they need, and take their antiviral drugs on time every day. When they do that, they become significantly less likely to pass their infections on to others – as HPTN 052 has proved.

The Post owes the woman whose privacy they have so outrageously violated a very public apology.

And they owe their readers honest education about HIV.

Frank J. Oldham, Jr.

President and CEO