Medical research — it’s not what it used to be

A pipette dropping sample into a test tube,abstract science backJustine Dyer could be the poster-woman for 21st century medical research on people with intellectual disabilities. Justine is 26 years old, has Down Syndrome, lives in a house with two roommates and has a job.

She is also undergoing screening for a trial for a drug that could help improve her memory and language skills.

To be a part of the drug trial, Justine has to give what is known as “informed consent,” and that’s a tough requirement for anyone with cognitive disabilities.  Historically, researchers and doctors have provided subjects with lengthy and complicated consent forms, making it difficult if not impossible for people like Justine to understand what they are signing up for.

Typically, they relied on a parent or guardian to make the decision for them and that was problematic. Ethical scientists want their subjects to fully understand all potential consequences of being in a drug trial.

Informed consent simplified

Researchers think they may have found a way to help trial participants better understand. Using pictures, cartoons and simplified language, doctors and scientists have created consent documents custom-made for people with intellectual disabilities.

I love what Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, says about the efforts underway.

“This is an era of participatory research,” he says. “We do not want to do research on people with Down Syndrome. We want to do research with people with Down Syndrome.”

This mindset and the commitment to working with individuals who have an understanding of what they are agreeing to is a far cry from the days when medical research was conducted at residential institutions for people with intellectual disabilities.

What happened at Willowbrook

The most famous of these research efforts occurred at Willowbrook State School on Staten Island, New York, in the 1950s. The lead scientist Dr. Saul Krugman has been almost universally condemned for his studies of hepatitis at the state school, home to thousands of children with intellectual disabilities.

After receiving consent from the parents of participating children, Krugman had the youngsters injected with a mild form of hepatitis. He was testing a theory that the body can build up its own antibodies to hepatitis in the same way that it does to polio.

Krugman’s study was far more complex than is described here, but it is fair to point out that he had been brought to Willowbrook to come up with ways to halt the spread of hepatitis at the school.  As a result of his work the incidence of hepatitis at Willowbrook was reduced by 85 percent.

Nevertheless, a positive outcome does not excuse unethical research.  There are plenty of arguments both for and against what Krugman did. And the result of the controversy and the difficulties with informed consent has been a reluctance by scientists to conduct studies that would benefit this population.

It’s a sign of the times and the progress that’s been made that people like Justine can fully participate in beneficial studies that help individuals like her. And it’s long overdue.

Are we missing something?

It happened again last week. Leaders of a social services agency were hauled before a legislative committee to Silhouette of helping hand between two climberexplain why vulnerable people under their care were injured or died.

This time, the leaders represented Child Protective Services (CPS), the Texas agency responsible for the protection of children in foster care.

It happened 20 years ago when I was spokesperson for what was then known as the Texas Department of Mental Health and Mental Retardation. The heads of my agency would be subpoenaed to testify at the state capitol about cases of abuse, neglect and death at state institutions.

Lawmakers always expressed outrage. The agency leaders always expressed regret and promised to do better.

History repeats itself — everywhere

This kind of historical repetition is not unique to Texas. It happens all over the country.

In the 1960s, the late Sen. Robert Kennedy toured Willowbrook State School on Staten Island, New York, and was appalled at the conditions he found. He told reporters afterward that people treat their pets better than the mentally disabled children were being treated at Willowbrook.

There was a huge public outcry, but nothing changed at the school. A few years later, television reporter Geraldo Rivera took a camera inside Willowbrook and captured on film the abusive and neglectful conditions.

There was another public outcry and legislative investigations. Money was appropriated and agency leaders promised to do better.

It seems to go in cycles. Every few years, there are news reports of vulnerable people – living under the supposed watchful eye of a tax-supported agency – who have been killed or badly hurt.

 We’ve heard all this before

This week, the leaders of CPS said they were taking aggressive steps to protect foster kids. Foster parents are being more closely scrutinized. Foster children are being visited more often. Training of case workers has been ramped up so they can better spot abuse. Technology is being upgraded and abuse prevention programs are being launched.

One senator said he had heard all these kinds of promises before. He wondered what is different this time. Another senator remarked that they must be missing something.

Both senators are right. They’ve heard all this before. And they are missing something.

What they are missing – what we all are missing – is that these outrageous situations will continue to occur as long as we underfund social services.

And even then, even if we provide adequate funding, the deaths and injuries will not end. We can only get close to that goal when each of us assumes responsibility for all of our vulnerable citizens – including children, people with disabilities and the elderly.

Making a more decent society

I like what my colleague J. David Smith, professor emeritus at the University of North Carolina at Greensboro, says about this issue.

Dr. Smith, who has written extensively about the treatment of people with disabilities, says we don’t have to all become social workers or in some way devote our lives to caring for these folks. We don’t have to all be like the Good Samaritan in the Bible, who risked his life and social standing to help someone others had shunned.

“We need more acutely, however, the day-to-day caring of the Minimal Decent Samaritans,” he wrote in his excellent book Ignored, Shunned and Invisible: How the Label “Retarded” has Denied Freedom and Dignity to Millions.

“It is that quality in ourselves and others that makes for a more decent society.”

To that, I say a hearty amen.

This is why we need journalists

106233_9376As a democracy, it is essential that we have newspapers, journalists and especially investigative reporters. How else are we going to hold our elected officials and governments accountable?

Besides, as York Times media critic David Carr has pointed out, if it weren’t for the Fourth Estate, what would the talking heads on Fox, MSNBC and talk radio have to yammer about?

But there’s another more compelling reason we need an independent and aggressive media. Our society depends on the reporting work of these watchdogs to dig out the bones and the skeletons that hide in our midst.

If it weren’t for their work, the general public wouldn’t know about Watergate or Iran-Contra or a host of other acts of skullduggery.  And we also wouldn’t know that 40 years after TV reporter Geraldo Rivera broke the news of scandalous conditions at the Willowbrook State School on Long Island, abusive  conditions still exist at state-run institutions in New York.

Must we have scandal to get reform?

Rivera’s shocking video footage of life inside the state institution for people with intellectual disabilities led to the eventual closure of the facility. At the time, New York Gov. Hugh Carey began a long overdue reform of the institutional system. And he appointed a commission and gave it strong authority to monitor the treatment of people living in institutions.

But that commission has since lost much of its power and its zeal for investigations. It tends now to play down allegations of abuse and its funding has been slashed to the point where it cannot be an effective overseer.

So now we have a situation where it’s hard to fire workers who abuse and neglect the vulnerable citizens who live in New York institutions. Worker unions have intervened in many cases and employees accused of such offenses as biting, hitting and leaving bleeding residents naked on the floor have been able to keep their jobs.

No finger-pointing allowed

New York is not unique on this front. The Austin American-Statesman’s Andrea Ball has reported faithfully on abusive conditions inside Texas institutions.

In Texas, at least, you can get fired for assaulting a resident at a state institution. Nevertheless, efforts to crack down on abuse have produced few results. Even the installation of surveillance cameras has done little to curb mistreatment.

As I mentioned in the beginning, stories like these remind us of why we need newspapers who hire investigative reporters.  They also remind us of why we need elected leaders who have the guts to insist on decency and humanity, even when they are opposed by powerful unions and other strong forces.

I’d hate to think the only way we can ensure civil rights for the disabled is for some terrible tragedy to occur in a state-run institution — or for someone like Geraldo Rivera to sneak a camera into a restricted area so the rest of us can see how disabled people are suffering .

A Willowbrook heroine

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. ”

Margaret Mead

I would guess that Barbara Blum, who was New York State’s social services commissioner from 1977 to 1982, would not consider herself to be one of the thoughtful, committed citizens that Margaret Mead spoke of.  But many others would.

Mrs. Blum, who died Saturday in Albany, N.Y., was a heroine in her own time and she changed hundreds of lives for the better. In the 1970s, she was given the task of finding homes for more than 1,000 residents of the infamous Willowbrook State School on Staten Island.

An infamous snake pit

The school, which was home to 6,000 people with intellectual disabilities, had been described as a “snake pit” by New York Sen. Robert Kennedy after he toured the facility in 1965. Residents were locked in wards, some of them naked and lying in their own waste, with minimal assistance and supervision.  Kennedy said animals in zoos had better living conditions. Willowbrook was nothing better than a human warehouse.

Kennedy’s statements created an uproar, but nothing changed until 1972, when New York City TV reporter Geraldo Rivera managed to get inside Willowbrook and film the deplorable conditions. The resulting public outcry forced the closure of the institution. When it came time to find homes for the thousands of displaced residents, several people turned down the job of leading the effort.

She did the impossible

After various social services organizations pronounced the task impossible and refused to help, Mrs. Blum worked with the Catholic and black community groups to find homes. Her efforts ultimately were successful, but she was met with fierce neighborhood opposition. She was pelted with eggs and her nose was broken.

As is so often the case, people do great things because of some personal heartbreak. For Mrs. Blum, her thoughtfulness and commitment were steeped in the reality that her son was born with autism.

Mrs. Blum’s death was reported in the New York Times. I will add her to the growing list of people I wish I had known.