Authorities across the country are under growing pressure to lift COVID-related restrictions.
Lisa Iezzoni, MD, a professor of medicine at Harvard Medical School and a disability researcher at Massachusetts General Hospital, has used a wheelchair for more than 30 years because of multiple sclerosis. When she visits her primary care doctor, she doesn't get weighed because the scales are not wheelchair accessible.
This failure to weigh her and other patients in wheelchairs could lead to serious medical problems. Weight is used to monitor a person's overall health and prenatal health and to determine accurate doses for medications such as some chemotherapies, says Iezzoni.
In another situation, a man who used a wheelchair said that his primary care doctor never got him out of it for a complete physical exam. The patient later developed lymphoma, which first appeared in his groin. The doctor should have accommodated his disability and used a height-adjustable exam table or a portable lift to transfer him onto the table.
When physicians don't provide access to medical care that patients with disabilities need, they put themselves at greater risk of lawsuits, fines, and settlements.
Yet, a new study in Health Affairs suggests that a large percentage of doctors are not fully aware of what they are legally required to do.
Under federal nondiscrimination laws (Americans With Disabilities Act [ADA], American Rehabilitation Act, and ADA Amendments Act), medical practices must provide equal access to people with disabilities, accommodate their disability-related needs, and not refuse them medical services because of their disabilities, say disability experts.
What doctors don't know about providing reasonable accommodations makes them vulnerable to lawsuits, which worries more than two thirds of the 714 outpatient doctors surveyed.
Not only are they required to provide reasonable accommodations, but they also have to pay for them, say the researchers. One fifth of the surveyed doctors said they didn't know that practice owners have to pay.
More than one practice has made patients pay for services needed for their disability, such as sign language interpreters — the patients later complained this violated the ADA to enforcement agencies.
Doctors also don't know that they have to collaborate with patients to determine what reasonable accommodations they need — over two thirds of those surveyed said they didn't know it was a joint responsibility, the study found.
Elizabeth Pendo, JD
When doctors fail to accommodate patients' disability needs, they engage in discrimination and violate the ADA, says Elizabeth Pendo, JD, a co-author of the study and the Joseph J. Simeone Professor of Law at St. Louis University School of Law in Missouri.
The US Department of Justice (DOJ) has investigated several patient complaints of alleged disability discrimination recently and resolved the disputes with agreements and small fines in some cases. "The goal is not to get large financial settlements but to work with practices to get the correct procedures in place to be compliant," says Pendo.
Physicians would be wise to check out whether their practices are as accessible as they think. Even if there's a ramp to the office building, the parking lot may not have a van-accessible space or enough handicapped parking signs, or the exam room may be too narrow for a wheelchair to navigate.
These practices violated the ADA and agreed to make changes:
Family & Internal Medicine, in Hamden, Connecticut, has two buildings that patients with physical disabilities couldn't easily enter. The physician owners agreed to change the buildings' entrances and access routes and add features to make it easier to use examination rooms and restrooms and the check-in and check-out areas.
Riverside Medical Clinic, with seven medical offices in Riverside, California, failed to communicate effectively with deaf and hard-of-hearing patients. They should have had a qualified sign language interpreter, an assistive listening device, or another appropriate aid or service available to a deaf patient and her family. Instead, the office relied on a video remote interpretation system that often failed to work.
The agreement requires the clinic to provide those aids and services to patients and their companions who are deaf or hard of hearing; advertise their availability; assess each patient who is deaf or hard of hearing to determine the best aids and services for their needs; and pay $5000 in compensation to the complainant and a $1000 civil penalty to the United States.
New England Orthopedic Surgeons, in Springfield, Massachusetts, refused to provide full joint replacements to two patients being treated with buprenorphine, a medication used to treat opioid use disorder. Rather than accommodate the patients, the surgeons referred them elsewhere because they were uncomfortable with the postoperative pain management protocol for patients prescribed buprenorphine.
"The Americans With Disabilities Act protects healthcare access for people under medical treatment for Opioid Use Disorder," said Acting US Attorney Nathaniel R. Mendell. "Healthcare providers must comply with the ADA, even when doing so is inconvenient or makes them uncomfortable."
The agreement requires the practice to adopt a nondiscrimination policy, provide training on the ADA and opioid use disorder, and pay two complainants $15,000 each for pain and suffering.
The DOJ has filed civil lawsuits against medical practices when they failed to resolve the allegations. Recent cases include an ophthalmology practice with 24 facilities in Arizona that refused to help transfer patients in wheelchairs to surgery tables for eye surgery and required them to pay for transfer support services and two obstetricians-gynecologists in Bakersfield, California, who refused to provide routine medical care to a patient because of her HIV status.
Many people tend to think of a person with a disability as being in a wheelchair. But the ADA has a very broad definition of disability, which includes any physical or mental impairment that substantially limits any major life activity, says Pendo.
"It was amended in 2008 to clarify that the definition includes people with chronic diseases such as diabetes and cancer, cognitive and neurological disorders, substance abuse disorders, vision and hearing loss, and learning and other disabilities," she says.
That means that doctors have to accommodate many types of disabilities, which can be challenging. The ADA only specifies that fixed structures need to be accessible, such as parking lots, driveways, and buildings, says Iezzoni.
When it comes to "reasonable accommodations," doctors should decide that on a case-by-case basis, she says.
"We can say based on our study that 71% of doctors don't know the right way to think about the accommodations ― they don't know they need to talk to patients so they can explain to them exactly what they need to accommodate their disability," says Iezzoni.
Doctors are also required to provide effective communication for patients with sensory or cognitive disabilities, which can depend on the severity, says Pendo. Is the person deaf or hard of hearing, blind or partially sighted — is the dementia mild or severe?
"The requirement is there, but what that looks like will vary by patient. That's what's challenging," says Pendo.
Iezzoni recommends that doctor's offices ask patients whether they need special help or individual assistance when they make appointments and enter their responses in their records. She also suggests that patients be asked at follow-up appointments whether they still need the same help or not.
"Disabilities can change over time — a person with bad arthritis may need help getting onto an exam table, but later get a knee or hip replacement that is effective and no longer need that help," says Iezonni.
Physicians have made progress in meeting the ADA's physical accessibility requirements, says Iezzoni. "The literature suggests that doctors have done a good job at fixing the structural barriers people with mobility issues face, such as ramps and bathrooms."
However, there are exceptions in rural older buildings which can be harder to retrofit for wheelchair accessibility, she says. "I recall interviewing a rural doctor several years ago who said that he knew his patients well and when a patient visits with mobility problems, he goes down and carries the patient up the steps to his office. My response was that is not respectful of the patient or safe for the patient or you. That doctor has since changed the location of his practice," says Iezzoni.
Some doctors may resist paying for accessible medical equipment due to cost, but she says the benefits are worth it. These include preventing staff injuries when they transfer patients and being used by patients with temporary disabilities and aging people with bad knees, backs, hearing and sight. In addition, businesses may be eligible for federal and state tax credits.
Iezzoni recently visited her doctor where they finally got height-adjustable exam tables. "I asked the assistant, who really likes these tables? She said it's the elderly ladies of short stature — the table is lowered and they sit down and get on it."
But, Iezonni's main message to doctors is that patients with disabilities deserve equal quality of care.
"Just because we have a disability doesn't mean we should get worse care than other people. It's a matter of professionalism that doctors should want to give the same quality care to all their patients."
White House press secretary Jen Psaki fielded questions from reporters on Tuesday for about 50 minutes and addressed President Biden’s confidence in Health and Human Services Secretary Xavier Becerra, the role of Spotify using misinformation disclaimers, and N95 masks for Americans.
Here’s the White House briefing — in brief.
Biden is confident in Becerra
Psaki said that Biden remains confident in Becerra amid reports of frustration from White House officials with the job the secretary has done during the COVID-19 pandemic.
“I would just reiterate that the president remains confident in the role of Secretary Becerra, he is somebody who is an important partner, he has been leading a range of efforts from the …Department of Health and Human Services,” Psaki said when asked if the president still has confidence in Becerra.
The Washington Post on Monday night reported that officials have openly discussed who might be better suited for Becerra’s role and that they have a poor relationship with Becerra.
Psaki called such reporting “palace intrigue.”
“We’re less focused on — not at all focused I should say — on palace intrigue as much as we are on vaccinating Americans, fighting the omicron surge, expanding testing capacity and getting more therapeutics out to the American people. And, that’s how we believe we, and the leaders of the cabinet, will be judged,” she said.
Becerra has been under fire for what critics say is a lack of leadership in the COVID-19 response and outside health experts and former officials have accused him of taking a back seat during the crisis.
Lilla Alexandra Porffy 1 
; Mitul A Mehta 1 ; Joel Patchitt 1, 2 ; Celia Boussebaa 1 ; Jack Brett 3 ; Teresa D’Oliveira 1 ; Elias Mouchlianitis 4 ; Sukhi S Shergill 1, 5, 6
Background:Cognitive deficits are present in several neuropsychiatric disorders, including Alzheimer disease, schizophrenia, and depression. Assessments used to measure cognition in these disorders are time-consuming, burdensome, and have low ecological validity. To address these limitations, we developed a novel virtual reality shopping task—VStore.
Objective:This study aims to establish the construct validity of VStore in relation to the established computerized cognitive battery, Cogstate, and explore its sensitivity to age-related cognitive decline.
Methods:A total of 142 healthy volunteers aged 20-79 years participated in the study. The main VStore outcomes included verbal recall of 12 grocery items, time to collect items, time to select items on a self-checkout machine, time to make the payment, time to order coffee, and total completion time. Construct validity was examined through a series of backward elimination regression models to establish which Cogstate tasks, measuring attention, processing speed, verbal and visual learning, working memory, executive function, and paired associate learning, in addition to age and technological familiarity, best predicted VStore performance. In addition, 2 ridge regression and 2 logistic regression models supplemented with receiver operating characteristic curves were built, with VStore outcomes in the first model and Cogstate outcomes in the second model entered as predictors of age and age cohorts, respectively.
Results:Overall VStore performance, as indexed by the total time spent completing the task, was best explained by Cogstate tasks measuring attention, working memory, paired associate learning, and age and technological familiarity, accounting for 47% of the variance. In addition, with λ=5.16, the ridge regression model selected 5 parameters for VStore when predicting age (mean squared error 185.80, SE 19.34), and with λ=9.49 for Cogstate, the model selected all 8 tasks (mean squared error 226.80, SE 23.48). Finally, VStore was found to be highly sensitive (87%) and specific (91.7%) to age cohorts, with 94.6% of the area under the receiver operating characteristic curve.
Conclusions:Our findings suggest that VStore is a promising assessment that engages standard cognitive domains and is sensitive to age-related cognitive decline.
Sio Gene Therapies, the biotech famously once known as Axovant, has not had a happy time. Last October it revealed a promising early clinical update from its GM1 gangliosidosis gene therapy, but since then its valuation has halved. With the group now trading at cash drastic action was needed, and yesterday came the defenestration of its chief executive, cancelling of a Parkinson’s disease deal with Oxford Biomedica, and tightened focus on the gangliosidosis projects AXO-AAV-GM1 and AXO-AAV-GM2. At the end of 2021 Sio had $82m of cash, which will now last beyond mid-2023. The Oxford deal, covering AXO-Lenti-PD, had been signed in 2018 when the then-Axovant was worth nearly 20 times more than now and aimed to become a “world-leading innovative neurology company”. With Parkinson’s becoming a competitive area it makes sense to leave the heavy lifting to bigger players, and GM1 and GM2 gangliosidosis look like niches better suited for Sio. AXO-Lenti-PD’s dose-escalation Sunrise-PD trial was to resume this year, but the sham-controlled Explore-PD never got under way in 2021 as planned, and Oxford now needs to find another partner to take it on. The project’s earlier iteration, Prosavin, was canned after generating weak efficacy.
| Selected gangliosidosis gene therapies in the clinic | |||
|---|---|---|---|
| Project | Company | Description | Study |
| GM1 gangliosidosis | |||
| AXO-AAV-GM1 | Sio Gene Therapies | AAV9 vector; IV delivery | NCT03952637 |
| PBGM01 | Passage Bio | AAVhu68 vector; ICM delivery | Imagine-1 |
| LYS-GM101 | Lysogene | AAVrh10 vector; ICM delivery | NCT04273269 |
| GM2 gangliosidosis (Tay-Sachs disease, AB variant & Sandhoff disease) | |||
| TSHA-101 | Taysha Gene Therapies | AAV9 vector; intrathecal delivery | NCT04798235 |
| AXO-AAV-GM2 | Sio Gene Therapies | AAVrh.8 vector; ICM/intrathecal delivery | NCT04669535 |
| Note: ICM=intra-cisterna magna. Source: Evaluate Pharma & clinicaltrials.gov. https://www.evaluate.com/vantage/articles/news/deals-snippets/sio-gene-accepts-reality | |||
