Kennedy treated their outreach with respect and seriousness. He reviewed what they sent, and asked for the data. After a period of time, he came to believe their research warranted further investigation by public health officials, and publicly stated so.
Louis Conte is a longtime law enforcement official and researcher, with two sons with autism. In the 2008, Conte with his own funds (not relying on government grants or subsidies) decided to research connections he had read about between autism and certain vaccines. As part of the research, Conte reviewed data from the National Vaccine Injury Compensation Program, the program established by Congress and launched in 1988 to compensate individuals injured by covered childhood vaccines.
Conte reached out to Kennedy with his initial findings. Conte recalls:
"I called him and left a message on his phone, not expecting any response since he did not know me. Within 10 minutes he called back and said he wanted to see the data."
Conte began a collaboration with Kennedy, that he has maintained to the present. "I came to learn that with Bobby, it's all about the data."
In 2011, Conte with Mary Holland, then Research Scholar at the New York University School of Law, and two other independent researchers published an article in the Pace University Environmental Law Review, "Unanswered Questions from the Vaccine Injury Compensation Program." The authors reviewed cases that had been compensated by Vaccine Injury Compensation Program and that, while not using the term autism, appeared to reference autism-related behaviors. Their conclusion: these cases did not prove causation of vaccines and autism, but they did suggest further research was called for.
The article attracted widespread attention. It brought numerous responses in law reviews and in the general press challenging the findings. The advocates did not give up their questioning, and the back and forth on vaccines and autism goes on, joined by new researchers along with adults with autism and family members.
It's difficult to see how such questioning, supported by Kennedy, is not a healthy element of public health policymaking, This is so especially when one considers the history of settled-science in autism over the past five decades. Ideas on causation which at one point were considered settled-science would later come to be recognized as false, and interventions hailed as breakthroughs would later come to be recognized as limited in impact.
The most notorious example is the "refrigerator mom" theory of autism that was considered a form of settled-science in the 1950s and 1960s. Autism was said to be caused by the behavior of the mother in early years, and her coldness towards her child. By the 1980s, the theory would be discredited. But for two decades it was put forward by major figures in public health, and popularized by prominent University of Chicago professor Bruno Bettelheim, a respected figure in the health establishment, in his 1967 book The Empty Fortress.
In the 1980s and 1990s, Applied Behavior Analysis would be hailed by public health officials as a breakthrough in autism "treatment". Over time, though, its mixed results would be revealed, and ethical questions raised. In recent decades, the national government health institutes have promised imminent breakthroughs in autism diagnosis techniques, biomarkers and brain imaging. But these breakthroughs so far have been limited, and autism is still diagnosed primarily by observed behaviors.
On a range of health matters, our autism community has benefited from on-going questioning of settled views.
Further, Kennedy's involvement with the autism community has extended well beyond vaccines. For years, Kennedy and a colleague, publisher Tony Lyons, have supported writing and efforts for the fuller integration of adults with autism in the social and economic mainstream: for fuller employment, independent living, and, housing opportunities.
These issues will continue to be priorities for Kennedy at HHS, as they should be given the agency's vast portfolio in human services. This portfolio, for example, includes the Building Evidence on Employment Strategies for Low Income Families (BEES) program, a series of sophisticated demonstration projects, aimed at increasing employment among individuals who struggle to find and hold jobs. Through BEES and other agency programs, the agency has the infrastructure and talent to far more fully address the low levels of employment for adults with autism. Under the agency's broad Administration for Children and Families division, it has the infrastructure and talent to do far more to address comorbidities and mental health challenges common in the autism community.
Kennedy At HHS
Kennedy's critics are correct in one regard: Kennedy brings a sensibility and background different from previous HHS Secretaries. Since the early 1950s, HHS has been led by men and women who came to HHS after rising in the meritocracy and holding high level establishment positions. In the 1960s and early 1970s, the Secretaries included John W. Gardner (previous President of the Carnegie Foundation for the Advancement of Teaching), Elliot Richardson (Attorney General of Massachusetts) and Casper Weinberger (California state finance director). More recent HHS Secretaries have been previous elected officials: Kathleen Sibelius, Mike Leavitt, Xavier Becerra.
Though their politics have differed, nearly all of these HHS directors have operated in a narrow policy-making spectrum. Policy was to be made by experts, who brought certain educational backgrounds and credentials. Advisory groups and stakeholder groups were formed. But the role of ordinary citizens was downplayed, as not serious science.
In contrast, Kennedy has been operating outside of government for decades, often based in volunteer and community efforts. His Presidential campaign was able to attract an army of parents and family members, who recognized in Kennedy someone who respected their lived experiences with health issues, and drew on their insights.
On health policy issues, Kennedy has turned to experts but also has turned to the experiences of persons directly affected by policy. After the initial Covid period, Kennedy challenged the ongoing school closures and economic shutdowns, drawing on the reports of parents, small business owners and workers. Their "non-expert" reports were largely dismissed by public health officials at the time--though subsequently these reports would be recognized as containing significant accuracy.
In his initial HHS press conference, Kennedy described his rejection of the idea of certainty in policymaking: "I'm going to keep asking questions but hold my preconceived answers lightly. I'm willing to be wrong."
He also emphasized that "nothing is going to be off limits," and that he would pursue "radical transparency" in sharing HHS data and decision-making processes with the public.
"We are going to listen to the experts, and to the dissidents. We are going to listen to the insiders and to the whistleblowers, We are going to listen to the doctors and we are going to listen to the moms."
Policymaking at HHS under Kennedy will be different than in previous Administrations. The more open processes should be welcomed by the autism community. These processes also should be welcomed by Americans alert to the health conditions that Kennedy has set out as his starting priorities: rising rates of chronic illness, childhood obesity, and medication of children.
Update on Kennedy and Measles Vaccine
This past Sunday, in response to the reported measles outbreak in Texas, Kennedy described the outbreak as a "call to action." He urged parents to consult with their health providers, and touted the measles (MMR) vaccine as "
crucial to avoiding potentially deadly disease."
1 comment:
I went to the doc today for a physical. Everything was fine except the cholesterol was a tad high. Everything else was better than I thought it'd be-- kidneys,liver,carotid artery,lungs,heart all excellent.
Then I passed out--I'm KIDDING.
He asked me if I wanted flu and Covid vaxxes.
"Nope."
"Okay,fine."
Always good to leave a doctor's office the way I did today
--GRA
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