NDY Urges FDA To Help People With Chronic Pain and Reject Misguided Opioid Crackdowns

For Immediate ReleaseNot Dead Yet, the Resistance
September 4, 2018

Contacts:
Diane Coleman 708.420.0539
Dominick Evans 937.776.6330

Not Dead Yet Urges FDA To Help People With Chronic Pain
and Reject Misguided Opioid Crackdowns

In response to the federal Food and Drug Administration’s request for comments on “the impacts of chronic pain, treatment approaches for chronic pain, and challenges or barriers to accessing treatments”, Not Dead Yet today filed a public comment on the harms caused by misguided crackdowns on legitimate opioid prescriptions for people with chronic pain.

“What we are seeing is many disabled people who are suffering due to the lack of access to opioid medication previously available as part of comprehensive strategies and approaches to address chronic pain,” the comment states.

“For some disabled people, opioids are the only medication or treatment that can help their pain. Now those who have chronic pain are treated with suspicion, as though they are abusing opioids, especially by medical personnel at doctors’ offices and hospitals. This is an even greater problem for people of color who have chronic pain, whom studies show already experience serious disparities in pain treatment.”

Many of the concerns expressed by people with chronic pain are validated by medical professionals in the field of pain management. “[A]n editorial in the American Journal of Public Health recently argued that the death rate from prescription opioids is inflated by including deaths where synthetic opioids like illicitly manufactured fentanyl (IMF) play a role,” the comment states. Quoting from a letter sent by over a dozen professionals in response to an Oregon proposal, the comment focused in on critical data demonstrating that:

[C]urtailed opioid prescribing has not correlated with a reduction in drug-overdose deaths. Although prescribing has dropped every year since 2012, drug overdose deaths during the same period have skyrocketed as the crisis has evolved to feature heroin and illicitly manufactured fentanyl and its analogs.”

Disability advocates also “noted that alternative therapies to treat pain are often not covered by insurance and may be unavailable to people with chronic pain for geographic or other reasons. Providers of alternative therapies may also be inaccessible to people with disabilities. And even people who can access the alternatives may find that they are either not helpful, or that they are most helpful when combined with opioids as part of a comprehensive/multi-faceted pain management plan.”

To read the full written comment, go here.

Not Dead Yet Opposes Judge Brett Kavanaugh’s Nomination To the U.S. Supreme Court

A central goal of Not Dead Yet is to voice disability opposition to legalization of assisted suicide. Therefore, people might wonder why Not Dead Yet opposes the nomination of Judge Brett Kavanaugh, who has expressed views against assisted suicide. We oppose his nomination to the U.S. Supreme Court because his written court opinions and expressed views threaten to dismantle the hard won civil rights and protections on which our very lives depend.

Several national disability rights organizations have analyzed Judge Kavanaugh’s record and documented their findings, including groups that join Not Dead Yet in opposing assisted suicide laws.

Our gravest concern is Judge Kavanaugh’s opposition to the Affordable Care Act, including protections for people with pre-existing conditions as well as home and community based alternatives to abusive warehousing in nursing facilities and institutions. It is simple math that managed care insurers will profit if expensive people are eliminated from their enrollment. As the American Association of People with Disabilities stated:

The Affordable Care Act (ACA) allowed millions more people with disabilities to gain access to health care by prohibiting discrimination on the basis of a pre-existing condition. Judge Kavanaugh has repeatedly expressed public skepticism of the ACA and has ruled in several cases to undermine elements of the law and hinder its implementation. These rulings set a dangerous precedent for the disability community.

The denial of healthcare and supports to live in freedom equal nothing less than backdoor euthanasia.

We are also concerned about the imposition of guardianships and other policies that strip people with disabilities of any health care decision making rights. As the Autistic Self Advocacy Network stated:

As a judge, Kavanaugh has a history of denying disabled people’s rights. In 2007, Kavanaugh ruled against 3 women with intellectual disabilities who had been forced to have abortions or other elective surgeries by the city of DC. In this ruling, he said that people with intellectual disabilities do not have the right to have any say at all in what kind of health care they get.

Surrogates can have conflicts of interest and must not be given carte blanche over our healthcare and lives. Supported decision making preserves our right to self determination.

Judge Kavanaugh has also been hostile to employment protections under the Americans with Disabilities Act. As the National Council on Independent Living stated:

Another particularly concerning ruling was Judge Kavanaugh’s Baloch v. Kempthorne decision to reject a worker’s disability discrimination and retaliation claims. In this case, a worker with a disability sued his employer for imposing strict sick leave restrictions, giving him low performance reviews, and directing “profanity-laden yelling” at him after he made a formal administrative complaint. Judge Kavanaugh’s decision in this case shows his active complicity in allowing abusive environments that are a direct threat to the health and well-being of America’s workforce, and it sets the tone for complacency in the face of hostile and discriminatory work environments.

The Americans with Disabilities Act’s protections against discrimination by health care providers and government entities (such as investigatory and prosecutorial agencies) also form a central legal basis for NDY’s friend of the court briefs filed in assisted suicide cases. Our position is that assisted suicide laws are unlawful discrimination, setting up a two-tiered system in which some people get suicide prevention while others get suicide assistance, with the difference based on their health and disability status.

The Disability Rights Education & Defense Fund summarizes the core values underlying the disability community’s deep concerns about Judge Kavanaugh’s nomination:

“We hold these truths to be self-evident, that all men are created equal.” This Declaration of Independence was written by the same founders who made our Constitution the supreme law of the land and divided the balance of power between three distinct branches of government to guard against authoritarian rule. As one of those three branches, the Judiciary’s primary role is to make certain that the Legislature passes laws, and the Executive administers those laws, in ways that respect key principles of the Constitution. Since 1789, the Supreme Court has held a unique and necessary position as the judicial last resort for individuals who seek justice in court and is, in effect, the final interpreter of the United States Constitution. In essence, the U.S. Supreme Court exists to ensure that fluctuating views of those with political influence or power do not undermine the fundamental core values that have consequences for, and are dear, to us all:  individual liberty, equality, majority rule with inalienable minority protections.

If Judge Kavanaugh’s discriminatory views are permitted to take hold in the judiciary of this country, more disabled and chronically ill people of all ages will be harmed by society’s ableist bigotry in countless ways. This is unacceptable and his nomination must be unequivocally opposed.

NDLA Organizers Forum: Chronic Pain, Opioids, and Disability

NDLA ORGANIZERS FORUM: Chronic Pain, Opioids, and Disability

TUESDAY, AUGUST 21, 2018
1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time


Call-in: 1-515-739-1285
Passcode: 521847#

To join through your computer, go to: https://www.freeconferencecall.com/wall/organizersforum


Chronic pain is a major issue for many disabled folks. In light of recent efforts to curb opioid abuse and overdoses, people with chronic pain have been facing increasing barriers to adequate pain management. This call will talk about the major issues people with chronic pain are facing right now and how the disability community can better advocate around these issues. September is Chronic Pain Awareness Month, so it’s an important time for us to learn what actions we can take in our communities.

Speakers: 

Eiryn Griest Schwartmann, Chronic Pain Advocate 

Sarah Blahovec, National Council on Independent Living (NCIL) Disability Vote Organizer and Chronic Pain Advocate

Lindsay Baran, Policy Analyst and Chair of NCIL’s Chronic Pain/Opioids Task Force

Please forward to your lists ASAP. (Be sure to include computer link and passcode to CART below.)

To give us an idea of who joins our calls, if you are interested in joining on Tuesday, please fill out this quick form! https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dHAxWEV5Y3h3MUtrcW1LYXhTcjZyYUE6MQ 

CART: The call will have real-time captioning (CART)! The website where you will be able to view the captioning is https://2020archive.1capapp.com/event/forum/.Thank you to the National Disability Leadership Alliance for sponsoring the captioning of this call.

If you need additional accommodations to participate in the call, please let us know as soon as possible. 

MARK YOUR CALENDARS! The Organizer’s Forum has a call on the 3rd Tuesday of each month, 1-2 pm EST (10-11 am PST).

NOTE: We have a listserv for discussion on these issues. It’s organizersforum@yahoogroups.com; please go to: http://groups.yahoo.com/group/organizersforum/ and click “Join this group!” We also have our separate announcement-only listserv to allow everyone to easily get notices about the Organizer’s Forum, called disabilityorganizing@googlegroups.com. Please email us to be added.We also have a Facebook page! We can use this is a way to continue our conversation beyond the monthly calls. Please “like” Organizer’s Forum on Facebook. http://www.facebook.com/profile.php?cropsuccess&id=680444432#!/pages/Organizers-Forum/228971863811531?sk=info

Background:

The Organizing Workgroup of the National Disability Leadership Alliance hosts these calls the third Tuesday of every month as a resource for disability organizers, in an effort toward building the organizing capacity of the disability community across the country. They generally follow the format of a Welcome followed by 2-3 experts in a given area speaking for a few minutes on their experiences, advice and challenges. The calls include a 20-30 minute question and answer period.

To ask questions via CART: Sign-in to the Chat function on the right side of the transcript and type your question.  One of the call facilitators will read out any questions posted there.

Because we want to maximize the generously donated CART services, we will begin the call promptly at 1pm and end the call promptly at 2pm (eastern time).

Anita Cameron – ADAPT and Not Dead Yet: In Solidarity

Not Dead Yet works with disability organizations around the nation in the fight against doctor assisted suicide.

One of these organizations is ADAPT, a national, grassroots disability rights organization working to ensure the civil rights, liberty and freedom of disabled people of all ages to live in our own homes in the community, rather than in nursing facilities or institutions.

ADAPT is in strong solidarity with Not Dead Yet that doctor assisted suicide is bad public policy. In fact, over 20 years ago, ADAPT was the first national disability group to join NDY in protests against “Dr. Death” (Jack Kevorkian) and in a friend of the court brief filed in the U.S. Supreme Court.

Why? Because ADAPT understands that people seeking the suicide drugs in Oregon cited loss of autonomy, feelings of being a burden, loss of the ability to engage in activities, loss of the ability to control bodily functions and loss of dignity as the top reasons for wanting to die. These are disability issues, not just terminal illness issues. Attendant care services and other supports in one’s home are the solution to this, not doctor assisted suicide!

ADAPT knows that assisted suicide sets up a two-tiered system of suicide prevention where non-disabled folks who express suicidal feelings receive suicide prevention services, while older, disabled and sick people are encouraged to seek doctor assisted suicide. The California legislature just passed AB 282 directly saying that it’s okay to “encourage” people to request assisted suicide!

ADAPT realizes that as assisted suicide spreads to states with diverse populations, Blacks, people of color and poor people will be especially vulnerable to assisted suicide due to disparities in healthcare delivery, including discrimination in prevention, treatment and pain relief.

ADAPT is aware that insurance companies are concerned about their bottom line. It’s all about the money. It’s far less expensive to kill someone than to care for them. Insurance companies in Oregon and California, where doctor assisted suicide is legal, have already denied patients lifesaving cancer treatments and offered assisted suicide instead.

For these and other reasons, ADAPT is firmly in solidarity with Not Dead Yet in vehemently opposing doctor assisted suicide. Access to services and supports at home, counseling and palliative care should be available to those who need it, rather than assisted suicide.

ADAPT is also working hard to promote the Disability Integration Act (HR 2472 and S 910) which would give people with disabilities and seniors the civil right to receive attendant services and other supports at home, instead of in institutions. It addresses many of the concerns of those who would feel they have no option but assisted suicide by assisting people to live, for whatever time they have, rather than assisting them to die.

 

NDY Public Comment On Guardianship Urges More Rights Protections for Disabled & Elders

One of the longest standing concerns of the disability rights movement is the misappropriation by others of our rights to make our own decisions. This problem touches every facet of life and is a major factor in the continuing incarceration of older and disabled people in nursing facilities and other institutions for the “crime” of needing help in activities of daily living like dressing, bathing, preparing meals, etc.

Guardianship is the most severe and oppressive means by which our decision making rights can be taken away. The U.S. Senate Committee on Aging recently issued a letter requesting comments on guardianship and alternatives to guardianship and NDY responded on July 19.

NDY’s comments focused on concerns about abuses by guardians, particularly in terms of well documented financial abuse. Far less documented is abuse in the context of healthcare decision making, almost invisible due to patient confidentiality. Yet it should be obvious that many healthcare decision makers are appointed by default under state statutes, and are not necessarily the trusted person the patient would have appointed while considered able to do so. In many cases, default decision makers may have a conflict of interest, for example, if they are an heir or a care giver. Some healthcare providers and allied personnel may be alert to such conflicts of interest, but others are not. Decisions to withhold life-sustaining treatment made by others are a major focus for NDY.

Our recommendations in the public comment point out a number of protections proposed as part of the Uniform Guardianship, Conservatorship and Other Protective Arrangements Act and urge the Committee to work with elder and disability organizations to identify provisions that could be enacted by Congress to establish basic procedural rights to be required in state laws. When needed, supported decision making should be the first approach, while guardianship should never be used except as a last resort. We also urge data gathering and reporting to help better identify abuses and increase accountability.

To review the entire NDY comment, go here.