Updated Edition!
This study evaluated efficacy of krill oil supplementation, compared with placebo, on knee pain in people with knee osteoarthritis who have significant knee pain and effusion-synovitis. It was designed as a multicenter, randomized, double-blind, placebo-controlled clinical trial that took place in 5 Australian cities. Participants with clinical knee osteoarthritis, significant knee pain, and effusion-synovitis on magnetic resonance imaging were enrolled from December 2016 to June 2019; final follow-up occurred on February 7, 2020.
The patients received
- 2 g/d of krill oil (n = 130)
- or matching placebo (n = 132) for 24 weeks.
The primary outcome was change in knee pain as assessed by visual analog scale (range, 0-100; 0 indicating least pain; minimum clinically important improvement = 15) over 24 weeks.
Of 262 participants randomized (mean age, 61.6 [SD, 9.6] years; 53% women), 222 (85%) completed the trial. Krill oil did not improve knee pain compared with placebo (mean change in VAS score, -19.9 [krill oil] vs -20.2 [placebo]; between-group mean difference, -0.3; 95% CI, -6.9 to 6.4) over 24 weeks. One or more adverse events was reported by 51% in the krill oil group (67/130) and by 54% in the placebo group (71/132). The most common adverse events were musculoskeletal and connective tissue disorders, which occurred 32 times in the krill oil group and 42 times in the placebo group, including knee pain (n = 10 with krill oil; n = 9 with placebo), lower extremity pain (n = 1 with krill oil; n = 5 with placebo), and hip pain (n = 3 with krill oil; n = 2 with placebo).
The authors concluded that, among people with knee osteoarthritis who have significant knee pain and effusion-synovitis on magnetic resonance imaging, 2 g/d of daily krill oil supplementation did not improve knee pain over 24 weeks compared with placebo. These findings do not support krill oil for treating knee pain in this population.
This is a rigorous and well-presented study. Apart from the ineffectiveness of krill, it confirms two issues very clearly:
- Placebo effects plus regression to the mean can lead to symptomatic improvements.
- Adverse effects occur even with placebo therapy.
Krill is a small crustacean consumed by whales, penguins and other sea creatures. It is a source of omega 3 fatty acids. The alleged benefits of krill supplements include anti-inflammatory effects. So, it could theoretically help reducing the inflammation that is part of knee osteoarthritis.
A review including five trials with 700 patients using krill oil for knee pain was recently published. Results showed no significant difference between krill oil and placebo for knee pain, knee stiffness, and lipid profiles. However, krill oil demonstrated a significant small effect in improving knee physical function. Trial sequential analysis provided certainty that krill oil enhances knee physical function compared to placebo and indicated no improvement in knee pain, but the findings for knee stiffness need to be confirmed by further research. The authors concluded that krill oil supplementation did not significantly improve knee pain, stiffness, or lipid profile, although it may help knee physical function. Based on these findings, krill oil supplementation is not yet justified for knee pain.
The two papers should settle the issue: KRILL IS NOT EFFECTIVE FOR KNEE OSTEOARTHRITIS. Will this stop the many manufacturers of krill supplements selling their products to gullible consumers? I would not hold my breath.
As you might imagine, I do get a lot of ‘fan mail’ that does not appear in the comments section of this blog and therefore remains invisible to my readers. Most of it is unremarkable but some of it is highly amusing and therefore deserves a wider audience, in my view. The two emails I received a couple of days ago fall in the latter category:
Dear Dr.Edzard,
Your views on HOMEOPATHY are rubbish.you are NOT clinician, but theretician.NHS is defunct…BULLSHIT .. Manipulation ,this same,chiropractic is quacery,I agree. I have practiced for 50 years being BEST in the world.I have invented ……….BACK RACK a manual spine device for BACK PAIN…and ELECTRIC SEAT /spine for Aviation / Automobiles.
..a UNIQUE world wide SPINE device
Rgds,
https://www.theluklinskispineclinic.com// BEST – CLINIC.WORLD /.
https://www.spinalbackrack.com/ . BEST spine devices devices ,WORLD /.
My response was very short:
- My last name is not Edzard
- I am a clinician
- Your English is abominable
- You seem to be a fool
It only took a few minutes for his reply to arrive:
Dear Edzard,
Thank you for your opinion….you are academic,hence ignorant / THICK /,not a clinician.I worked with Dr L.Mount / Queen physician and many others fools..in Harley st. W1,making ml.p/a…..curing thousends of patients.No wonder you were sacked as you are arrogant prick to say least….At least am not a quack…but ..world class..
no rgds,
B.M.Luklinski
I did not send a further resonse to B.M.Luklinski. Instead I’d like to take this opportunity to thank him for amusing me [and hopefully many of my readers as well].
PS
In case you want further amusement, I suggest you click on the two links my friend provided.
The JOURNAL OF BUSINESS ETHICS (I did not even know such a journal existed) recently carried a most interesting article. Here is its abstract:
Consumers spend billions of dollars per year on homeopathic products. But there is powerful evidence that these products don’t work, i.e., they are not medically effective. Should homeopathic products be for sale? I give reason for thinking that the answer is ‘no.’ It has been suggested that the sale of homeopathic products involves deception. This might be so in some cases, but the problem is simpler: it is that these products don’t do what people buy them to do. More precisely, homeopathic products don’t meet the “desire-satisfaction condition,” according to which products for sale in markets should satisfy the desires that people buy them to satisfy. I defend my view against objections, and conclude by acknowledging some of the practical difficulties of banning products people want to buy.
Allow me to introduce you to the logic of the author, Jeffrey Moriarty, in a little more detail. Essentially, he argues as follows:
- There is powerful evidence that homeopathic products don’t work, i.e., they are not medically effective. As we have discussed ad nauseam on my blog, this is certainly true.
- Thus they don’t meet the “desire-satisfaction condition,” according to which the sale of a product should satisfy the desire(s) that people buy it to satisfy. Regulators prohibit retailers from advertising in ways that cause reasonable people to have materially false beliefs. It doesn’t matter to regulators whether advertisers cause false beliefs intentionally, and therefore deceive consumers, or unintentionally, and therefore merely mislead them. The point is to prevent consumers from acting on false information; however, they acquire it.
- If a product doesn’t meet the “desire-satisfaction condition” condition, then there is a presumption against selling it. When people act on false information in markets, they are likely to make themselves worse off. We can understand how this works in terms of the satisfaction of desires. People engage in market exchanges in order to satisfy their desires. When their desires are satisfied as a result of market exchange, they are better off. You want a car that runs and seek to buy one. When you purchase the car, and it does run, you are better off. But when people act on false information, they are likely to frustrate rather than satisfy their desires. As a result, they are likely to be worse off. If the car you purchase doesn’t run, you are worse off. You spent your money on something you didn’t want.
- The products people buy should satisfy the desires they buy them to satisfy. This is the “desire-satisfaction condition” for market exchange. Transactions that reliably don’t result in desire-satisfaction are problematic. Because desires aren’t satisfied, this is evidence that value isn’t being created; the party whose desires are not satisfied is worse off. Since markets should make people better off, there is a presumption against allowing these transactions.
- The author states that his arguments also apply to other medicines and medical treatments that we have powerful reason to believe don’t work.
Jeffrey Moriatry concludes: When people purchase homeopathic products, they act on false information, and in doing so, fail to satisfy their desires. This is a sign that the purchase does not create value for them. Since market transactions should create value, there is a presumption in favor of prohibiting this transaction … we give states broad authority to decide what sorts of products can and can’t be sold, including medicines. This suggests that people generally think that banning the sale of certain products, despite the costs of doing so, is worth it. It also suggests that people think that the state uses its power competently and fairly—or at least that it doesn’t use it so incompetently and unfairly that it is better for the state not to have this power. The state would be doing nothing out of the ordinary in prohibiting the sale of homeopathic products.
_________________________
These arguments are interesting and relevant (sorry, if I have not represented them fully; I recommend reading the full article). Personally, I have never argued that the sales of homeopathics should be banned; I felt that good and responsible information is essential and would eventually reduce sales to an insignificant level. Yet, after reading this paper, I have to admit that its arguments make sense.
I’d love to hear what you think about them.
Alternative cancer clinics (I’d prefer to call them SCAM cancer clinics), that provide treatments associated with hastening death, actively seek to create favorable views of their services online. An unexplored means where such clinics can shape their public appeal is their Google search results.
For this study, a team of researchers retrieved the Google listing and Google reviews of 47 prominent SCAM cancer clinics. They then conducted a content analysis to assess the information cancer patients are faced with online.
The results show that Google listings of alternative treatment providers rarely declare that the clinic is a SCAM clinic versus a conventional primary cancer treatment provider (12.8% declared; 83.0% undeclared). The clinics were highly rated (median, 4.5 stars of 5). Reasons for positive reviews included:
- treatment quality (n = 519),
- care (n = 420),
- outcomes (n = 316).
288 reviews claimed that the clinics cured or improved cancer. Negative reviews presented SCAM clinics to:
- financially exploit patients with ineffective treatment (n = 98),
- worsen patients’ condition (n = 72),
- provide poor care (n = 41),
- misrepresent outcomes (n = 23).
The authors concluded that the favorable Google listing and reviews of alternative clinics contribute to harmful online ecosystems. Reviews provide compelling narratives but are an ineffective indicator of treatment outcomes. Google lacks safeguards for truthful reviews and should not be used for medical decision-making.
These findings suggest that the Google listings and reviews of SCAM cancer clinic create a favorable online impression to prospective patients. Google listings and reviews are thus part of a most effective multi-level propaganda network promoting SCAM even for the most desperately ill of all patients. As discussed some time ago, in the UK, such misinformation can even be traced back to King Charles. In nearly all cases, these clinics were labeled as speciality primary cancer options. Only a few clinics were marked as an ‘alternative’ option. Positive reviews stated that alternative treatments can cure cancer or prolong life, even in terminal cases. Positive reviews also undermine evidence-based cancer treatments in favor of SCAM. They generate an impression that dangerously misleads patients. As we have seen repeatedly on this blog, the results can be devastating, e.g.:
- SCAM: So-Called Alternative Medicine (Societas): Amazon.co.uk: Ernst, Edzard: 9781845409708: Books
- So-called alternative medicine (SCAM) for cancer: does it prolong survival?
- Leah Bracknell (1964-2019): another victim of cancer quackery?
- Germany, the ‘promised land’ for cancer quacks
- Use of alternative medicine hastens death of cancer patients
- Fatalities in a German alternative medicine clinic caused by 3BP?
- Suzanne Somers has died – another victim of so-called alternative medicine?
- There is no question that cancer patients deserve measures that improve their QoL.
- There is also no question that essential oils contain active ingredients.
- Yet, it is doubtful that they reach the blood stream in sufficient concentrations to have meaningful health effects.
- Much more likely is the notion that not the oils but the massage during a typical aromatherapy is the effective element of the treatment.
- In addition, we have to think of the placebo effect [which is difficult to control for in clinical trials of aromatherapy].
So, should we use aromatherapy for cancer patients?
If it makes a patient feel better, I would use it. But there are many patients who dislike to be touched/massaged; in such cases, I would not advocate it. In addition, I would try to find out whether there are other measures that are more effective for improving the QoL (e.g. an emapthetic conversation, a cup of tea, a kind gesture, a visit from a friend) of my patient.
In any case, I would not think of aromatherapy as a THERAPY. It is more pamering and TLC than a real therapy that interfers with the disease process; it has more to do with wellness that with cure. And I would certainly caution of the many specific claims made for aromaatherapy by its enthusiasts; they are usually not supported by sound evidence, they may distract from truly effective therapies, and they have nothing to do with any pharmacological effects that the essential oils may or may not have.
Recent studies have demonstrated that sociopolitical attitudes partially explain variance in (SARS-CoV-2) vaccine hesitancy and uptake. Other attitudes, such as those towards esoteric beliefs, so-called alternative medicine (SCAM), and religion, have also been proposed. However, pertinent studies provide limited direction for public health efforts, as the impact of such attitudes has been tested in isolation or on different outcomes. Moreover, related associations between SARS-CoV-2 immunization drivers as well as views towards other modes of immunization (e.g., routine pediatric immunization), remain unclear.
Based on a sample of ~7400 survey participants (Germany), where esoteric belief systems and SCAM (Waldorf, homeopathy) are rather prevalent, and controlling for other sociological factors, this study found that:
- individuals with positive attitudes towards Waldorf education and homeopathy are significantly less likely to have received a (further) dose of SARS-CoV-2 vaccine compared to those with positive views of mainstream medicine;
- for the former, immunization decisions are primarily driven by external pressures, and for the latter overwhelmingly by voluntary considerations;
- attitudes influencing adult SARS-CoV-2 vaccine uptake similarly influence views towards routine pediatric immunization.
The authors concluded that their findings provide significant evidence informing a more nuanced design of public health and communication campaigns, and pertinent policies.
As the authors of this study point out, the attitudes towards mainstream medicine remained the single most influential factor for vaccine uptake. Individuals who viewed mainstream medicine highly favorably, received on average an estimated 1.48 (p < 0.001) more doses of SARS-CoV-2 vaccine than those who held very negative views. In contrast, those who viewed homeopathy highly positively received on average 0.51 (p < 0.001) fewer doses than those who viewed homeopathy highly negatively.
Regarding religious denominations, individuals self-classifying as Roman-Catholic or Protestant received on average 0.17 (p < 0.001) and 0.15 (p < 0.001) more vaccine doses than those self-classifying as non-denominational. The associations between other denominations and vaccine doses were statistically insignificant.
While these associations have been observed before or at least seem logical to me (and we discusses them frequently on this blog), one finding is, I think new (albeit not surprising, in my view): Supporters of the right-wing populist AfD received 1.37 (p < 0.001) fewer vaccine doses than the reference category Christian democrats.
So, does that in essence mean that the typical (German) vaccination hesitant person votes extereme right and loves SCAM?
To date, two open-label clinical trials have indicated that acupuncture may be more effective than standard medication for chronic migraine. However, drawing definitive conclusions from these trials is challenging. Studies employing a double-dummy design can eliminate the placebo effect and offer more unbiased estimates of efficacy.
This double-dummy, single-blind, randomized controlled trial compared the efficacy and safety of acupuncture and topiramate for chronic migraine. Participants, aged 18–65 years and diagnosed with chronic migraine, were randomly assigned (1:1) to receive:
- acupuncture (three sessions/week) plus topiramate placebo (acupuncture group),
- or topiramate (50–100 mg/day) plus sham acupuncture (topiramate group) over 12 weeks.
The primary outcome was the mean change in monthly migraine days during weeks 1–12.
Of 123 screened patients, 60 (mean age 45.8, 81.7% female) were randomly assigned to the acupuncture or topiramate groups. Acupuncture demonstrated significantly greater reductions in monthly migraine days than topiramate. No severe adverse events were reported.
The authors concluded that acupuncture may be safe and effective for treating chronic migraine. The efficacy of 12 weeks of acupuncture was sustained for 24 weeks and superior to that of topiramate. Acupuncture can be used as an optional preventive therapy for chronic migraine.
I beg to differ!
The authors claim that the participants, outcome assessors, and statistical analysts were blinded (masked) to the group allocations. However, the success of patient blinding was not tested. Why?
The authors state that, in the acupuncture group, “twirling, lifting, and thrusting were performed to produce deqi (a sensation of soreness, numbness, distention, or heaviness that indicates effective needling)… In the topiramate group, sham acupuncture was administered on non-effective acupoints, without manual deqi manipulations.” In other words, patients could very easily tell to which group they had been randomised.
This, in turn, means that a placebo effect – possibly enhanced by verbal or non-verbal communication from the (non-blinded) actupuncturists – has most likely caused the observed outcomes. I therefore feel the need to re-phrase the authors’ conclusions:
This study confirms that acupuncture produces a large placebo effect. Whether it has any effects beyond placebo cannot be determined by this study. Until this point has been clarified, acupuncture should not be used as a preventive therapy for chronic migraine.
As many of my readers will know (I have posted before on this topic), Schuessler Salts are highly diluted remedies invented by the German homeopath, Wilhelm Schuessler. They contain nothing in high enough concentrations to have any effect on our health. They were nonetheless heavily promoted by the Nazis during the Third Reich as part of the ‘New German Medicine’. I also posted about this before and about the fact that the only ‘clinical tests’ ever conducted of Schuessler Salts were carried out on non-consenting prisoners of the Dachau concentration camp.
Recently, I found more on this particular aspect in a book (Rau P, Voggenreiter M, Ude-Koeller S, Leven K-H: Medizintäter. Boehlau Verlag, Wien. 2022). Allow me to provide some of the key points made there:
Reichsfuehrer SS, Heinrich Himmler, ordered that Schuessler Salts should be tested on concentration camp prisoners, and the experiment began in November 1942. Great importance was attached to these experiments, so much so that even Ernst Grawitz made a visit to Dachau in order to see for himself. They experiments were carried out on on 40 non-consenting Polish priests.
Heinrich Schütz was in charge of the experiments.
Doctor Schütz (1906 – 1986) had been employed at the Dachau SS military hospital since 1940. In 1941, he was transferred to the SS armoured division Leibstandarte SS Adolf Hitler, and in March 1942 – along with his promotion to SS-Sturmbannführer – he took over the management of the internal department of the Dachau SS hospital. In mid-June 1942, Schütz became head of the Biochemical* Experimental Station in the infirmary of the Dachau concentration camp. In September 1944, Schütz moved to the SS military hospital in Bad Aussee as chief physician. Detained by the Allies in an internment camp from the end of the war, Schütz was released in 1947 and settled in Essen where he practised as a specialist in internal medicine. In 1971, he was remanded in custody for human experimentation but was released on bail. In December 1972, the Munich II Regional Court opened proceedings against Schütz for his involvement in human experimentation; Heinz Wolf, a member of the Klöckner Werke Management Board, subsequently paid the six-figure bail. On 20 November 1975, he was sentenced to ten years’ imprisonment for “accessory to murder and attempted murder” on eleven counts. Due to medically certified incapacity, Schütz did not have to serve his prison sentence. He then lived his life as a retiree and died on 12.11.1986 in Feldafing, Germany.
*There is some confusion here, as the Schuessler Salts were also called ‘Biochemie nach Schuessler’.
The camp doctor of Dachau, Karl Babor, personally assisted the experiments.
Karl Babor (1918 – 1964) was an Austrian doctor who, from November 1941, was a camp doctor at the Groß-Rosen concentration camp where he killed prisoners suffering from typhus fever using phenol and prussic acid injections. He was awarded the War Cross of Merit 2nd Class for “services rendered in the fight against the typhus epidemic”. From mid-June 1942, he served in the Dachau concentration camp. Subsequently he was employed as a camp doctor at the Natzweiler-Struthof concentration camp. On 10 December 1943, Babor was transferred to Oranienburg to the Main Office D in Office D III, responsible for medical services and camp hygiene in the Inspectorate of Concentration Camps. From August 1944, he was a troop doctor in the I Battalion of the SS Panzer Grenadier Regiment 6 . He was promoted to Hauptsturmführer in November 1944. After the end of the war, he was taken prisoner of war in France. In the early 1950s, Babor fled to Ethiopia and opened a private practice in Addis Ababa. After his wife had denounced him, a manhunt was launched in Austria for his involvement in concentration camp crimes. When he was about to get caught, he shot himself near Addis Ababa.
The site doctor Waldemar Wolter served as a further assistant to the experiments.
Waldemar Woler (1908 – 1947) was the SS camp doctor in charge of the Hinzert SS special camp until the end of December 1941. He carried out on 16 October 1941 the murder of 70 alleged Soviet political commissars of the Red Army. Wolter was then a camp doctor at Sachsenhausen concentration camp and, from 1942 onwards, at the Dachau concentration camp. From August 1944 to April 1945, he was a site doctor at the Mauthausen concentration camp where he is said to have administered lethal injections to prisoners. Wolter is also said to have carried out selections for the “Aktion 14f13”, which supplied handicapped patients to the Nazi killing centre in Hartheim. On 30 January 1945, Wolter was promoted to SS-Sturmbannführer of the reserve. After the end of the war, Waldemar Wolter was indicted together with 60 other representatives of the camp administration in the main Mauthausen trial in 1946. He was accused of ordering the gassing of 1,400 to 2,700 prisoners shortly before the end of the war. On 13 May 1946, Wolter was sentenced to death by hanging. He was transferred to the Landsberg war crimes prison and executed there on 28 May 1947.
For the Schuessler Salt experiments, the priests were injected with pus into their thighs. Half of them were then treated with sulphonamides and the other half with Schuessler Salts. Within the two groups, completely untreated subjects were also included as controls. One subject, Isydor Szyma, later stated: “After 2 days I developed a very high fever that reached 40 degrees… My legs were very swollen, ulcerated and rotting. The flesh fell off in pieces. I couldn’t stand the pain. I screamed and howled like an animal.” The experiments had a fatal outcome for 28 test subjects.
The progression of the infections was documented photographically. The results confirmed the effectiveness of sulphonamides and the ineffectiveness of Schuessler Salts. They would certainly have been even more dramatically negative and there would have been many more deaths had it not been for the inmate head nurse Heinrich Stöhr, the only hero in this story. He managed to save the lives of some of the Schuessler group’s test subjects by giving them sulphonamides without authorisation.
Heinrich Stöhr had joined the SPD at the age of 18 and was arrested as an SPD functionary in April 1934. In 1940, he was imprisoned in the Dachau concentration camp. From 1941, he became head nurse in the phlegmons ward there. He enforced better conditions in his department and risked his life to save many prisoners of different nationalities. After the war, he devoted all his energy to rebuilding Germany and the SPD. During the Nuremberg Trials, Stöhr was a witness for the prosecution in the doctors’ trial in December 1946. Stöhr became a member of the State Constituent Assembly and the 1st Bavarian State Parliament as a member of parliament for the constituency of Middle Franconia and was re-elected in 1950, 1954 and 1958. After his re-election in 1958, he collapsed at a railway station on his way to the opening of the state parliament. “I have worked too much in the last six months” were his last words.
When I still worked as a clinician, I have looked after athletes long enough to know that they go for everything that promises to improve their performance. It is thus hardly surprising that Olympians would try all sorts of so-called alternative medicine (SCAM) regardless of whether the therapy is supported by evidence or not. Skeptics are tempted to dismiss all of SCAM for improving fitness. But is that fair? Is it true that no evidence evists for any of them?
The short answer to this question is NO.
Here I have looked at some of the possibilities and show you some of the Medline-listed papers that seem to support SCAM as a means of improving fitness:
Acupuncture
Ashwagandha
Balneology
Cupping
Ginkgo biloba
Ice
Kinesiology tape
Massage guns
Percussion massage
Sports massage
Tai massage
Vibrational massage
Yoga
Please do not mistake this for anything resembling a systematic review of the evidence; it is merely a list to give you a flavour of what is out there. And please don’t assume that the list is complete; I am sure that there is much more.
Looking at the articles that I found, one could get the impression that there is plenty of good evidence to support SCAM for improving fitness. This, however, would be wrong. The evidence for almost every of the above listed therapies is flimsy to say the least. But – as I stated already at the beginning – in my experience, this will not stop athletes to use them.
During recent months, I have (once again) began to study the horrors of Nazi medicine. The results of this work will soon be published as a (Springer) book entitled ‘HITLER’S FEMALE PHYSICIANS – WOMEN DOCTORS DURING THE THIRD REICH AND THEIR CRIMES AGAINST HUMANITY’. When dealing with this subject, it is impossible to avoid going into the systematic murder of disabled people by the Nazis during the Third Reich. For those who don’t know about this subject, here is a very short summary.
The Nazi ‘euthanasia program’ was initiated by Hitler in 1939 to coincide with the start of WWII. ‘Aktion T4’, the first wave of the killing, focussed on disabled children who were considered unworthy of life. Even though the Nazis tried to keep it secret, protests soon emerged and the program was thus officially stopped in 1941. However, the killing continued during a second, decentralised wave, also often referred to as ‘Aktion Brandt’. The third wave, code-named ‘Aktion 14f13’, started in 1941 and focussed on prisoners of the concentration camps. In total between 200 000 and 300 000 people were murdered.
In this context, news about Donald Trump might, I fear, be relevant. Fred C. Trump III, the nephew of Donald, is the father of a disabled son and wrote the following:
In our journey with William, Lisa [Fred’s wife] and I had become close to some truly inspiring parents and dedicated advocates who were doing amazing work to improve the day-to-day reality for families like ours. It’s a huge lift for caregivers, not to mention the constant need to mitigate expenses. There are so many different demands and challenges. But there are things that the government can do—some things that can only be done by the government, both federal and state. We wanted to bring knowledgeable people to the White House, to see if we could make a difference.
Lisa reached out to my cousin Ivanka, who was working in the White House as an advisor to the President. Ivanka got right back to her and said she’d be happy to help. She provided a contact for Ben Carson, the retired neurosurgeon who was secretary of housing and urban development. We brought several talented advocates with us for a meeting with Carson and members of his senior staff in April 2017. “Look,” I said as we got started, “I’m the least important person in the room.” I wanted the focus to be on the others, who knew a lot more than I did. They immediately started floating ideas, which was exactly why we were there. Our collective voice was being heard. It was a start.
In January 2020, just before COVID hit, Lisa, myself, and a team of advocates met with Chris Neeley, who headed the President’s Committee for People with Intellectual Disabilities, a much-needed federal advisory committee that promotes policies and initiatives that support independent and lifelong inclusion. We discussed the need for all medical schools to include courses that focus on people with intellectual and developmental disabilities. We emphasized how crucial it was for hospitals and other acute-care facilities to help patients transition from pediatric to adult services. We emphasized the importance of collecting sufficient data to explain medically complex disorders. This was not about more government spending. It was about smarter investing and greater efficiency…
The meeting I had assumed would be a quick handshake hello with Donald had turned into a 45-minute discussion in the Oval Office with all of us—Azar, Giroir, the advocates, and me. I never expected to be there so long. Donald seemed engaged, especially when several people in our group spoke about the heart-wrenching and expensive efforts they’d made to care for their profoundly disabled family members, who were constantly in and out of the hospital and living with complex arrays of challenges.
Donald was still Donald, of course. He bounced from subject to subject—disability to the stock market and back to disability. But promisingly, Donald seemed genuinely curious regarding the depth of medical needs across the U.S. and the individual challenges these families faced. He told the secretary and the assistant secretary to stay in touch with our group and to be supportive.
After I left the office, I was standing with the others near the side entrance to the West Wing when Donald’s assistant caught up with me. “Your uncle would like to see you,” she said.
Azar was still in the Oval Office when I walked back in. “Hey, pal,” Donald said. “How’s everything going?”
“Good,” I said. “I appreciate your meeting with us.”
“Sure, happy to do it.”
He sounded interested and even concerned. I thought he had been touched by what the doctor and advocates in the meeting had just shared about their journey with their patients and their own family members. But I was wrong.
“Those people . . . ” Donald said, trailing off. “The shape they’re in, all the expenses, maybe those kinds of people should just die.”
I truly did not know what to say. He was talking about expenses. We were talking about human lives. For Donald, I think it really was about the expenses, even though we were there to talk about efficiencies, smarter investments, and human dignity.
I turned and walked away.
At a later stage, Fred met Donald again.
I was up at Briarcliff Manor, home of the Trump National Golf Club in Westchester, N.Y. Donald happened to be there. He was talking with a group of people. I didn’t want to interrupt. I just said hi on my way through the clubhouse. I called him later that afternoon, and he answered.
I got him up to speed on what Eric had told me. I said I’d heard the fund for William was running low, and unfortunately, the expenses certainly were not easing up as our son got older. In fact, with inflation and other pressures, the needs were greater than they’d been. “We’re getting some blowback from Maryanne and Elizabeth and Ann Marie. We may need your help with this. Eric wanted me to give you a call.”
Donald took a second as if he was thinking about the whole situation.
“I don’t know,” he finally said, letting out a sigh. “He doesn’t recognize you. Maybe you should just let him die and move down to Florida.” …
_____________________
As I have stressed before, there are many good reasons why Donald Trump should never again come near the White House. As a doctor and a researcher of Nazi medicine, I feel strongly that this is one of them.
