Not Dead Yet Joins National Call To Repair Or Replace Recalled Breathing Devices

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Not Dead Yet, the ResistanceNot Dead Yet Joins National Call To Repair Or Replace Recalled Breathing Devices

[Rochester, NY, August 26, 2021] Today, Not Dead Yet joined in a letter from individuals who depend on recalled ventilators and other breathing devices manufactured by Philips Respironics, along with over two dozen disability organizations, demanding that Philips repair or replace the devices. The recall was announced in June, stating that the devices were found to release potentially harmful particles and gasses, but offering little information and no timeline for corrective action.

Not Dead Yet (NDY) is a national disability rights group that opposes public policies of assisted suicide and euthanasia, as well as the involuntary denial of life-sustaining medical treatment. NDY’s founder and CEO, Diane Coleman, is among the affected individuals. “When I see that many people only found out about the recall by word of mouth or social media, I feel lucky that my local respiratory provider called me. I love my life and have always been pro-active in protecting my health, but they still have no idea when my ventilator will be replaced. The more I learn, the more I’m scared about being harmed by every breath I’m taking,” said Coleman, quoted in a press release issued through the New York Law School and its Civil Rights and Disability Justice Clinic, which is working on behalf of the group.

The full text of the group’s press release follows.

Philips Device Users, Civil Rights and Disability Advocates Call For Immediate Repair and Replacement of Recalled Philips Respironics Devices 

New York, NY (August 26, 2021) – Philips device users, the Civil Rights and Disability Justice Clinic at New York Law School, and more than two dozen disability rights organizations and advocates, sent a letter to Philips Respironics today requesting immediate action to repair, replace, and offer guidance to medical professionals on recalled devices relied upon by many users for life-sustaining care.

On June 14, 2021, Philips Respironics issued a recall of thirteen models of ventilators, CPAP, and BiPAP machines. The recall advises that users immediately discontinue use of the affected machines due to the degradation of a foam contained inside the devices that can be inhaled or release certain chemicals that are potentially carcinogenic or have other adverse side effects. However, users who require the devices for life-sustaining care were advised to not cease use of them, and instead told to speak to their physicians, who have not been provided with adequate guidance from Philips Respironics.

Device users had to take it upon themselves to not only get word of the recall out starting in mid-June, but they have also had to organize to push Philips to take basic action.

“Disabled people are once again expected to come up with a contingency plan for ourselves. I am outraged that so little has been done by Philips to recognize, take ownership of, and communicate the urgency that this moment requires for folks like myself who need access to this equipment. This goes far beyond an issue of just replacing faulty medical supplies. Because when we contextualize it during this time of an airborne pandemic, a time of poor air quality in some areas of the country due to climate change, and a time when safe access to services for disabled people is already challenging we see the ways where the system has failed us, again. To leave disabled people without any adequate back-up or an effective course of action was a decision that Philips knew about, and although it is appalling it isn’t shocking to me. This is how ableism works,” Sandy Ho, disabled CPAP user, disability policy researcher and community-organizer.

The letter today demands that Philips immediately develop and implement a device repair and/or replacement process and timeline that prioritizes users who depend on their equipment for survival or that Philips provide so-affected users with comparable devices from other manufacturers free-of-cost. A copy of the letter is attached.

“As a long-term user of both the DreamStation and Trilogy 100, I am terrified for myself and millions impacted by the recall globally. I am an unwitting character in a real-life horror film,” said Alice Wong, Disability Visibility Project. Wong’s outreach to users via social media just one day after the recall was issued resulted in a groundswell of people learning that they were at risk.

Philips acknowledged that extreme heat and humidity exacerbate the degradation of the foam particles in the device. However, in the middle of the summer months and more than two months after the issuance of the recall, many users of Philips equipment have been left with their recalled devices in conditions of intense heat, humidity, and even wildfires that further jeopardize their equipment and health.

“People with disabilities have essentially been left to inhale potentially toxic air through their devices for an indeterminate period of time or to pay for temporary fixes that they are uncertain can protect them. This is not okay,” said Professor Britney Wilson, civil rights attorney and Director of the Civil Rights and Disability Justice Clinic at New York Law School. “We’re calling on Philips to develop, communicate, and execute a repair and replacement plan that prioritizes users who depend on their devices to live and to be transparent about what led to the recall, how Philips is monitoring complaints concerning potential health impacts, and what information about potential risks associated with the long-term continued use of their devices and how to mitigate them has been communicated to healthcare providers and professionals.”

“When I see that many people only found out about the recall by word of mouth or social media, I feel lucky that my local respiratory provider called me. I love my life and have always been pro-active in protecting my health, but they still have no idea when my ventilator will be replaced. The more I learn, the more I’m scared about being harmed by every breath I’m taking,” said Diane Coleman, President & CEO, Not Dead Yet.

Media Contact

New York Law School / communications@nyls.edu / 212-431-2872

Not Dead Yet Contact: Diane Coleman dcoleman@notdeadyet.org 708-420-0539

 

DREDF’s Marilyn Golden Files Testimony Opposing California Assisted Suicide Expansion Bill

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Marilyn Golden

California’s assisted suicide expansion bill, SB 380, was on the Assembly Appropriations Committee docket today, with written testimony to be submitted prior to the hearing. DREDF’s Senior Policy Analyst Marilyn Golden submitted the following testimony.

August 14, 2021

OPPOSE SB 380 (Eggman) – End of Life

 The Disability Rights Education & Defense Fund (DREDF) opposes SB 380, a bill that would expand assisted suicide in California.

DREDF, founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. We are based in the East Bay and have a governmental affairs office in Washington D.C. Pursuant to a decision in 1999 to oppose the legalization of assisted suicide and euthanasia, we have been active against such bills and initiatives in many states.

When the “End of Life Option Act” legalized assisted suicide in California, proponents including Senator Eggman pointed to patient protections such as a 15-day waiting or “cooling off” period, based on the clear medical reality shown in studies that patients who decide to hasten their death often change their minds. For example, the Lancet British medical journal found that almost a third changed their minds within 12 hours! And 60-70% in a month’s time.

The disability community is full of individuals who have been misdiagnosed as terminally ill, but gone on to live full lives after that initial scare. A bad day should not be a death sentence a few hours later!

This Act has extraordinarily little monitoring, data, and investigation of abuse—there’s not even a phone number to call if concerned family members or friends fear their loved one is being coerced. It’s almost as if the law is set up to avoid finding problems.

The annual statistical reports are very minimal for such an important public policy. One example is that assisted suicide laws in Oregon and Washington State require that these states at least make public doctor-reported data on why their patients chose to hasten their death. Might it have been the economic pressures so rampant in our broken, profit-driven health care system? But in California, there is no requirement to report such data on patient reasons. So, this important data is therefore missing from the California reports. We must ask, why?

That is only one example. California also doesn’t report statistics about referrals for psychological evaluations, unlike in other states. There is no data about what happened after ingestion—were there complications? All medical procedures have some complications, but the public is not informed about complications accompanying this important procedure in California. Yet complications have come to light in Oregon. Nevertheless, California is considering removing the End of Life Option Act sunset clause—without any in-depth examination of how the Act has functioned.

Assisted suicide is not about choice when people with disabilities lack access to sufficient medical care. Shouldn’t we be more concerned that poor communities, including our aging and disability communities, as well as Black, Latino, and indigenous communities, often lack even basic primary care, not to mention specialized care such as cancer care, palliative care, and hospice care? Should we not prioritize these before access to lethal drugs?

We urge you to OPPOSE SB 380 (Eggman) and
maintain important safeguards for consumers.

Not Dead Yet submitted a statement supporting this testimony and incorporating from Golden’s op-ed on the problems with the bill:

This rush to erode the safeguards included in the 2015 End of Life Option Act is dangerous public policy. There is simply no data or science to support removing them so soon.

Annual reports on the End of Life Option Act required by the State of California do not contain any data whatsoever detailing complications or patients’ reasons for requesting the lethal drugs. For the limited data that is provided, too much remains listed as “unknown.” Over the past year, due to the COVID pandemic, we have become sadly familiar with how important medical and scientific data are in making informed public policy decisions; especially those involving life and death.

With the benefit of hindsight, it appears that the protections proponents touted as safeguards were no more than a ruse to get the original law passed.

For example, the latest California annual report on the End of Life Option Act released in July 2020 reports that 10% of those requesting the lethal drugs had an “unknown” insurance coverage, and it was “unknown” whether 7% ever received information about available hospice or palliative care options.

In a March 2021 New York Times interview with Dr. Diane E. Wright, longtime Director of the Center to Advance Palliative Care at Mount Sinai Hospital, Dr. Wright noted, “All the heartfelt adherence to restrictions that are announced when you first get the public to vote in favor of this go up in smoke once the practice is validated.”

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The report from advocates who attended the hearing is that “SB 380 has been moved to the Suspense file. The Chair did not take any public comment on bills on suspense and requested all comments to be directed to the committee via writing.” That’s all we know for now.

Joan Cavanagh, Progressives Against Medical Assisted Suicide: Another Point of View

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Seven activists identifying as “Progressives Against Medical Assisted Suicide” presented an alternative viewpoint at a screening of “Prescription for Peace of Mind: An Option for the Terminally Ill” at the New Haven Free Public Library on Wednesday, August 11.

Five protesters with hats and face masks, one in a wheelchair, hold 3 signs in front of stone pillars at the entrance of a walkway toward a building with trees in the background.
Progressives Against Medical Assisted Suicide

The seven held signs reading “Suicide is Not a Medical Treatment” and “Medical Assisted Suicide threatens the elderly, the poor, the disabled, you.” They passed out leaflets* with nine reasons to oppose legislation allowing doctors to prescribe lethal drugs to those they define as terminally ill. Five went inside to raise their objections directly to the two filmmakers. The screening was sparsely attended.

Presented as part of the New Haven Documentary Film Series, the film makes no pretense of objectivity. In addition to the three individuals whose very sad stories are told, family members who have spoken in support of MAS [medically assisted suicide] are also interviewed at length. In a statement perhaps unintended to be so revealing, one family member, a nurse who also attended the screening, remarks that her reason for supporting the legislation is that the hospice care for her dying father was so inadequate and unhelpful.

The film also features Compassion and Choices Connecticut Field Director Tim Appleton and Rep. Jonathan Steinberg (D., Fairfield), a long-time prime mover of MAS legislation in Connecticut. The voices of disability justice and other activists who testify before our state legislature annually and work continually to educate about the dangers of MAS are nowhere to be heard.

The five challenged this glaring and deliberate omission and discussed the dangers of MAS in detail, recounting painful personal stories of unyielding institutional pressure by the medical system to end life-sustaining treatment for their own loved ones. They cited cost-cutting imperatives by hospitals and insurance companies combined with prejudice against the disabled, the elderly, and the poor as twin threats which can only be further enabled by this legislation. In the words of activist Elaine Kolb, Medical Assisted Suicide is not a “slippery slope” but a juggernaut.

The most recent Assisted Suicide bill in Connecticut was voted out of the Public Health Committee for the first time in 2021, then moved to the Judiciary Committee which chose not to bring it to a vote. Opponents expect another bill to be brought forward next year and are getting prepared.
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SAVE THE DATE: Saturday, October 2, 2021. “NOT DEAD YET” community speak-out and singalong with invited speakers to be announced. New Haven Free Public Library Community Program Room, 2-4 pm. Fully accessible venue. Masks required.
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* Flyer:

PRESCRIPTION FOR WHOSE PEACE OF MIND?

Medical Assisted Suicide is fraught with peril for the most vulnerable among us- the elderly, disabled, and poor, who are already viewed by the medical system and the insurance companies as too costly to treat and thus expendable. There are no imaginable “safeguards” that can change this reality. To legalize this practice would only increase the discrimination and trauma many of us experience in our ongoing struggle for decent health care for ourselves, our families and our loved ones, a struggle which has already cost the lives of far too many.

We ask you to think critically as you view the film, “Prescription for Peace of Mind: An Option for the Terminally Ill.”

Nine Reasons to Oppose Medical Assisted Suicide

  1. In our cost-cutting health care system, it encourages the rationing of health care for the most “expensive” patients: the elderly, disabled, seriously ill and poor.
  2. It subjects the vulnerable to potential overt or covert abuse that can never be adequately monitored.
  3. It encourages a rush to judgement as to how “terminal illness” is defined.
  4. It promotes the idea of extreme individualism and self-sufficiency, the notion that being vulnerable and needing care is somehow “undignified,” the idea that we live in a vacuum with no responsibility for or to each other.
  5. It erodes patient confidence in our health care providers, causing justified fear that they will advocate for the suicide option in difficult cases.
  6. It requires doctors to lie about the facts of a patient’s death, citing the illness as the cause, not the ingestion of the lethal medication.
  7. It does not necessarily guarantee a “peaceful” or immediate end of life.
  8. It promotes suicide as a desirable option at a time where suicide among the young has become an epidemic and suicide prevention is public policy.
  9. It opens the door to involuntary euthanasia of those deemed “defective,” such as people with advanced dementia or severe disability that renders them unable to communicate.

For further discussion of the reasons to oppose medical assisted suicide, please go to www.notdeadyet.org and http://dredf.org/public-policy/assisted suicide.

The advocates of Medical Assisted Suicide (or “Aid in Dying,” as they call it) legislation in Connecticut and elsewhere have tried to make it appear that the only opposition to it comes from religious conservatives. This is untrue. Social progressives are increasingly coming to understand just how dangerous it is and to recognize it as bad public policy.  

To join the growing local email list for Progressives Against Medical Assisted Suicide, please contact joan.cavanagh@gmail.com, or add your name to the sign-up sheet today.

Medical assisted suicide threatens the poor, the elderly, the disabled and you.

Progressives Against Medical Assisted Suicide

08 11 2021

A Disabled Researcher Doing Research on Disability, Media, and Internalized Stigma!

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A doctoral student from the California School of Professional Psychology is conducting research to learn more about emotional response, disability and media, and experienced internal stigma among disabled people. If you are an adult with a mobility disability between the ages of 18 to 65, have had a disability for at least 2 years, and live in the US, you are invited to participate in this study. People who complete the online survey have the chance to enter a raffle to win 1 $25 or 1 $100 AMAZON GIFT CARD!!!!!! To learn more about the study or participate in it please follow this link: https://tinyurl.com/disabilitydissertation. Please email disabilityandstigma@gmail.com with any questions.

Approved by Alliant International University Institutional Review Board

Lisa Blumberg: The Little Known Issue of Medical Deportations by Hospitals

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A 2021 report prepared by the Free Migration Project and University of Pennsylvania Law  Students entitled “Fatal Flights: Medical Deportation in the U.S.”  is eye-opening and shocking.

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Lisa Blumberg

Usually, when one hears the frightening word “deportation”, one thinks of governmental action, officials dragging people from their homes and sending them out of the country. With medical deportation though, it is a hospital taking the action when faced with an often undocumented and usually uninsured immigrant patient that the hospital does not want to treat.

The report contains citations for all cases referred to in this blog.

According to the report, medical deportation is the physical removal by a non-government entity of an immigrant patient who is critically injured or ill from one country to another without the informed consent of the patient or the patient’s authorized caregiver. This practice is usually not in the patient’s best medical interests and typically results in poorer health outcomes or even death for the removed patient. Hospitals disguise the practice as medical repatriation—when a patient who is traveling or working abroad wants to return to their home country to receive medical care. But this is not medical repatriation. Medical deportations happen all across the U.S. but are rarely reported. To carry out medical deportations, hospitals hire medical transport companies to fly patients to their countries of citizenship. Just one flight can cost as much as $50,000. These deportations typically happen without any involvement by immigration courts or the Department of Homeland Security. Once undocumented immigrants leave the U.S., it may be difficult or impossible to return.

Medical Deportation occurs in the shadows. Hospitals are not subject to reporting requirements and because of their precarious situation, undocumented patients and their families are leery about asking for outside help or resisting a medical “recommendation”. Thus, data is scant.

In December 2012, the Center for Social Justice at Seton Hall Law School and the Health Justice Program at New York Lawyers for the Public Interest documented more than 800 cases of attempted or medical deportations in just six years. The identified cases included deportations from hospitals in fifteen states—Arizona, California, Florida, Georgia, Illinois, Maryland, Michigan, Nebraska, Nevada, New Jersey, New York, North Carolina, Ohio, Tennessee, and Texas—to El Salvador, Guatemala, Honduras, Lithuania, Mexico, the Philippines and South Korea.

As an example of these cases, in 2011, a hospital in Chicago deported a young Mexican laborer in his twenties who fell from a roof and became quadriplegic, without his consent. The hospital in Mexico where he was sent couldn’t afford new filters for his ventilator and would simply clean them daily. The man died just over a year after he was flown from the United States.

In 2016, NPR reported on an undocumented and uninsured man who had suffered a stroke and required months of intensive therapy. After three months of therapy, the hospital described facing “a real financial burden” in continuing to care for the patient, and rehabilitation facilities refused to admit him. A doctor involved in this case described the hospital’s choice as follows:

From the hospital’s point of view, it was easy to see that this large one-time expense [to fly the patient by air ambulance out of the country] would be worthwhile. The transfer to Mexico would put a stop to the indefinite, uncompensated costs of continued hospitalization. Further, the transfer would open up the patient’s bed to a new (and presumably insured) patient.[i]

In 2020, Jefferson Torresdale Hospital attempted to deport a member of the Philadelphia community identified as A.V, after he suffered catastrophic brain injuries from a motorcycle accident. This attempt was fortunately unsuccessful due to the advocacy spearheaded by family.

The report states that medical deportation is an issue that sits at the intersection of healthcare and immigration policy. There is an omission here. Medical deportation is an issue that sits at the intersection of healthcare, disability and immigration policy. The cases mentioned in the report all involve people who will probably have long-term disabilities. A hospital has no incentive to incur the expense of medical transportation for “one and done” patients, patients who can be quickly treated and who then will cause no further issues.

The flaw in the otherwise insightful report is the lack of explicit awareness of the disability dimension to all this. For example, the report calls for effective discharge planning without   recognizing this means more social commitment to in-home support and outpatient services. It mentions the need for language interpreters so the patient will understand what he is being asked to agree to, but ignores a possible need for bilingual sign language interpreter. Significantly, while the report states that more research is needed to  determine if international  human rights laws could be used to stop medical deportation,  it overlooks the possibility that state and federal civil rights protections for people with disabilities could be relevant. (NOTE: I have not studied this issue).

Nonetheless, the report has done a tremendous service in bringing attention to the reprehensible practice of medical deportation. Its recommendations include universal access to healthcare and expanding the breadth of emergency Medicaid in the interim, regulatory efforts to end these deportations and stepped up advocacy.

The Free Migration Project is working on a National Directory of advocates who are available for patients and fellow advocates dealing with the issue of medical deportation.   Instructions on how to join is given in the report. This is an emerging issue.

Endnote:

[i] Fatal Flights: Medical Deportation In the U.S., page 4; And see, John Henning Schumann, When the Cost of Care Triggers a Medical Deportation, NPR (Apr. 9, 2016, 7:00 AM), https://www.npr.org/sections/health-shots/2016/04/09/473358504/when-the-cost-of-care-triggers-a-medical-deportation