Axios on PhRMA: "Tens of millions in grants were funneled to patient advocacy groups that often stay silent about rising drug prices. Some of the largest PhRMA-funded patient groups were the Addiction Policy Forum, the Leukemia & Lymphoma Society and the AIDS Institute."
Why they call it "the revolving door."
From POGO:
In July 2017, [Agriculture Secretary Sonny] Perdue named Maggie Lyons, a former lobbyist for the National Grocers Association, as chief of staff to the acting deputy undersecretary of Food, Nutrition, and Consumer Services; and Kailee Tkacz, most recently food policy director at the Corn Refiners Association and previously a lobbyist for the Snack Food Association and National Grocers Association, as a policy advisor. (Perdue also tapped Brandon Lipps, a former counsel at the House Agricultural Committee under Rep. Frank Lucas (R-OK), as acting deputy undersecretary of Food, Nutrition, and Consumer Services.)
...CNN and POGO on Food lobbying:
In September 2017, lobbyists from the Corn Refiners Association and the Sugar Association secured a meeting with Lyons and Lipps to discuss both the dietary guidelines and a potential Dietary Reference Intake for carbohydrates, such as fiber and sugar. A Dietary Reference Intake is a standard established by an expert committee convened by the National Academy of Medicine and sponsored by public agencies including USDA. The standards the committee establishes then inform other recommendations, such as nutrition labeling requirements and the dietary guidelines. The meeting demonstrates the degree to which these top USDA appointees were willing to meet with industry groups—one of which had recently employed their colleague, Tkacz.
The National Grocers Association provides talking points to Agriculture Secretary Sonny Perdue: In his February speech to the association, Perdue echoes the talking points, telling the grocers that "your stores many times are the only stores available for food for miles around, and we don't acknowledge that very often, but I ... appreciate you sticking it out. I appreciate you sticking it out not because you are certainly getting rich in doing that, I understand that you're not ... there for the money, you're living there because you know it is supportive to the community ... you're not driven by Wall Street, certainly, you're driven by Main Street, and you are making a difference there where you serve."
Citing your own ghost-written letter: "On Tuesday, Mother Jones reported that a lobbyist for the Financial Services Institute, an industry trade group whose members stand to benefit from weaker investor protections, secretly wrote a letter signed by 32 progressive House Democrats aimed at scaling back new regulations the Department of Labor (DOL) wants to impose on retirement investment advisers. Now, in an only-in-Washington twist, FSI is citing the letter its lobbyist ghostwrote to bolster its case against these protections, including in a recent missive to the Securities and Exchange Commission (SEC) urging a delay in implementing them." Note a cameo in the story.
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The complexity of giving to higher education (Callahan 241-242, 252-260) and Michael Bloomberg has just given us an example.
Networks and Coalitions
- From October 25: The Democracy Alliance
- The Koch Network (Berry 210-212)
CASE STUDY: AUTISM
Autism illustrates three major points about interest group politics:
- Changes in the perceived extent of a problem lead to changes in interest group activity.
- Interest group activity on one issue may foster activity on related issues. In this case, the civil rights movement spawned the disability rights movement, which spawned the autism rights movement.
- Interest group activity on any issue is often full of factionalism and conflict among groups. In the case of autism, the conflict includes death threats.
The "Early History" of Autism
- 1943: American psychiatrist Leo Kanner publishes “Autistic Disturbances of Affective Contact” (Nervous Child 2 (1943): 217-250), identifying autism as a childhood psychiatric disorder.
- 1948: In another article, Kanner says that autistic children “were kept neatly in refrigerators which did not defrost.” Time popularizes the idea in an article titled "Frosted Children."
- 1959: Bruno Bettelheim publishes “Joey: A Mechanical Boy,” in Scientific American 200 (March 1959): 117-126. A condensed version reaches a larger audience through Reader's Digest. The article gains even more attention for the "refrigerator mother" theory.
- 1960: Armstrong Circle Theater presents “The HiddenWorld,” a highly favorable dramatization of Bettelheim's work, with actor Peter von Zerneck portraying Bettelheim.
- 1964: Bernard Rimland publishes Infantile Autism, a book summarizing current research and refuting the "refrigerator mother" theory.
- 1965: Psychologist Ole Ivar Lovaas develops the Applied Behavior Analysis. The May 7 issue of Life gives it national publicity in “Screams, Slaps, and Love: A Surprising,Shocking Treatment Helps Far-Gone Mental Cripples.”
- 1965: Rimland and 60 others form the National Society for Autistic Children (NSAC), later the Autism Society of America.
- 1967: Bettelheim publishes The Empty Fortress, a book expanding on his theory and criticizing Rimland. Bettelheim is a celebrity who gets many more readers.
The Disability Rights Movement and the Law
- 1927: The "civil libertarian" Oliver Wendell Holmes writes the majority opinion in Buck v. Bell, upholding involuntary sterilization of people with mental disabilities:
- We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetence. It is better for all the world if, instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough
- 1945-46: Veterans come home, many with disabilities
- 1973: Congress passes the Rehabilitation Act of 1973 (P.L. 93-112). Section 504 forbids discrimination against the handicapped "under any program or activity receiving federal financial assistance.”
- 1975: Congress passes the Education of All Handicapped Children Act (PL 94-142) requiring free, appropriate public education in the least restrictive setting. The law later gets the more familiar name of the Individuals with Disabilities Education Act. See Shapiro, pp. 165-166.
- 1975: The Developmental Disabilities Assistance and Bill of Rights Act (P.L. 94-103) creates a "bill of rights" for persons with developmental disabilities, funds services, and establishes protection and advocacy organizations in each state. Because of lobbying by NSAC, it includes autism .
- 1975: In O'Connor v. Donaldson (422 U.S. 563), SCOTUS says: "A State cannot constitutionally confine, without more, a nondangerous individual who is capable of surviving safely in freedom by himself or with the help of willing and responsible family members or friends
- 1982: The Rowley case (458 U. S. 176) narrows the scope of EAHCA. See p. 189 of Fleischer and Zames.
- 1987: Lovaas publishes a study reporting a 47 percent recovery rate with ABA.
- 1988: Rain Man introduces autism to millions of moviegoers.
- 1990: The Individuals with Disabilities Education Act Amendments (IDEA) (P.L. 101-476) renames the Education of the Handicapped Act and reauthorizes programs under the Act to improve support services. Autism becomes a separate category in IDEA for special education.
- 1994: The fourth edition of the Diagnostic and Statistical Manual (DSM-IV) expands the definition of autism.
- 1998: Dr. Andrew Wakefield and others publish a fraudulent study in the Lancet about MMR vaccinated children diagnosed with autism spectrum disorders.
- 2000: President Clinton signs the Children's Health Act, founding an autism research coordinating committee.
- 2002: Wakefield tells the House Government Reform and Oversight committee that there is “compelling evidence” of a link between vaccines and autism, even though studies have already discredited his research.
Autism Takes Off
Autistic children aged 3 to 21 receiving services under the Individuals with Disabilities Education Act (in thousands)
The Interest Group Universe
Peak Associations
Anti-Vaccine Activists
Pro-Science Groups
Self-Advocates
Professional Organizations
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