The Opioid Crisis the News Isn’t Talking About

Our News & Commentary Blog, public comment,
Not Dead Yet, the Resistance
Response to RFI – Opioid Public Health Emergency[1] 

February 20, 2018

We are members of Not Dead Yet, a national grassroots disability rights organization, and some of us are living with chronic pain ourselves. Based on our knowledge of the disability community through personal experience and through our work, we have not seen disabled people with chronic pain experiencing opioid use disorder. What we are seeing is many disabled people who are suffering due to the lack of access to opioid medication[2] previously available as part of comprehensive strategies and approaches to address chronic pain. They are experiencing an increase in chronic pain and other symptoms associated with that pain. Disabled people and others with chronic pain are rarely the ones who are abusing opioids,[3] but they are the ones who are having to deal with chronic pain symptoms without access to medications that made this pain more tolerable.

That is not to say that some disabled people will not have opioid use disorder. However, from our observation, chronic pain is not a causal factor[4] in who has abused opioids. Instead, opioids are a mitigating factor in how independent those with chronic pain are able to be. Having to deal with chronic pain with no relief, when opioid medication prevented such pain, can greatly affect the quality of life[5] disabled people with chronic pain have. It can affect their ability to perform activities of daily living. It can affect their ability to sleep. It can affect their mood. It can affect their productivity. Those with chronic pain that is untreated or mistreated are more likely to be depressed,[6] and depression itself can also be linked[7] to physical pain. Being depressed and in pain can also make disabled people more susceptible to suicidal ideation,[8] especially when there is seemingly no relief to the long-term pain they experience.

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,[9] as though they are abusing opioids, especially by medical personnel at doctors’ offices and hospitals when they seek out this medication. Doctors are increasingly afraid and unwilling[10] to prescribe opioids, so instead of continuing effective treatment for those who have seen great benefits from using these medications, too often doctors are essentially abandoning those who truly need access to opioids.

Opioid abuse is a problem, but it is not a problem for the overwhelming majority[11] of the disability community or others with chronic pain. It’s a problem for those who have already been abusing these medications. Those are typically not people who need these medications to handle long-term chronic pain.

Yet, as sometimes misguided approaches to addressing the opioid crisis are hastily undertaken across the country, the very individuals, who benefit greatly in terms of health and productivity from continued opioid use as part of a comprehensive pain management strategy, are the people who face the most scrutiny and harm by not having access to medically necessary and appropriate medication.

HHS/ACL must recognize the harmful effects of a misguided crackdown on the legitimate use of opioids for chronic pain, educate state governments and providers about research on this issue, and discourage federal, state and local programs that do more harm than good in addressing the opioid crisis.

[1] https://www.acl.gov/sites/default/files/about-acl/2018-01/Final_RFI_Opioid_Use_Disorder_PwD_Jan2018.pdf

[2] Andrew Rosenblum, et al., Opioids and the Treatment of Chronic Pain: Controversies, Current Status, and Future Directions (2008)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711509/

[3] Maia Szalavitz, Opioid Addiction Is a Huge Problem, but Pain Prescriptions Are Not the Cause (Scientific American, May 10, 2016)https://blogs.scientificamerican.com/mind-guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/

[4] Michael A, Yokell, et al., Presentation of Prescription and Nonprescription Opioid Overdoses to US Emergency Departments (Jama Intern Med, Dec 2014)https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1918924

[5] McCarberg BH, et al., The impact of pain on quality of life and the unmet needs of pain management: results from pain sufferers and physicians participating in an Internet survey (Am J Ther 2008) https://www.ncbi.nlm.nih.gov/pubmed/18645331

[6] Bair MJ, et al., Depression and pain comorbidity: a literature review, (Arch Intern Med, Nov 2003) https://www.ncbi.nlm.nih.gov/pubmed/14609780

[7] Madhukar H. Trivedi, M.D., The Link Between Depression and Physical Symptoms (Prim Care Companion J Clin Psychiatry, 2004)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC486942/

[8] Beverly Kleiber, et al., Depression and Pain (Psychiatry, May 2005) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000181/

[9] Chronic pain patients say opioid crackdown is hurting them (Chicago Tribune, June 5, 2017) http://www.chicagotribune.com/lifestyles/health/ct-opioid-patients-backlash-met-20170603-story.html

[10] Kelly K. Daneen, et al., Between a Rock and a Hard Place: Can Physicians Prescribe Opioids to Treat Pain Adequately While Avoiding Legal Sanction? (Am J Law Med 2016)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5494184/

[11] Nobel M, et al., Opioids for long-term treatment of noncancer pain (Cochrane, Jan 2010) http://www.cochrane.org/CD006605/SYMPT_opioids-long-term-treatment-noncancer-pain

Disability Activists Protesting HR 620 Arrested for Disrupting Congress

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Anita Cameron is loaded into lift equipped police van following arrest by police.

NDY’s Anita Cameron was arrested twice this week along with others, fighting to preserve the civil rights of people with disabilities (including, btw, the 36% of seniors who have disabilities). She was interviewed for an extensive article in Truthout, Disability Activists Crash Congress to Stop a Bill That Would Undermine Their Civil Rights:

Anita Cameron remembers the Capitol Crawl like it was yesterday. It was the spring of 1990, and Congress was dragging its feet toward a vote on the Americans with Disabilities Act (ADA), a landmark piece of legislation protecting the civil rights of people with disabilities. To call attention to the bill and the accessibility challenges that people with disabilities face on a daily basis, Cameron and dozens of other activists left their wheelchairs and walkers at the steps of the Capitol building and crawled their way to the top before filling the rotunda with their chanting voices.

Cameron and more than 100 others were arrested that day. [Editor’s note: In 1990, I was proud to be among them. – DC] The protest had an impact: President George H. W. Bush signed the ADA into law a couple of months later.

However, the ADA has not been a magic bullet and is now under threat. Cameron, a Black feminist and LGBTQ activist, was back on Capitol Hill this week protesting a bill in the House that advocates say would gut the ADA in favor of businesses that have failed to accommodate people with disabilities.

As the House members voted 225-192 to pass the bill on Thursday, dozens of activists made their way into the chambers and could be heard chanting as surprised lawmakers turned to look over their shoulders. Cameron was arrested again along with 16 other people, marking her 134th arrest as a disability activist, according to organizers on the ground. The bill, known as HR 620, would make it more difficult to file lawsuits under the ADA against public accommodations like restaurants and stores that are not accessible to people with disabilities.

To read the full article, go here.

The ADA doesn’t provide for monetary damages against violators, and few if any local code departments include ADA compliance in their business permit requirements, so the only incentive for businesses to comply is fear of lawsuits. The bill that passed the House of Representatives, while disabled protesters were dragged out and arrested, would remove that incentive by providing businesses a series of extensions to comply, beyond the 28 years they’ve already had, so long as they can show they’re “making progress”, which is not defined.

MSNBC Rachel Maddow’s coverage of the protest can be seen here, along with a photo of some of the protesters from the Center for Disability Rights.

Photo of nine people, five standing and four seated in wheelchairs, with “MSNBC” and “The Rachel Maddow Show” on the lower part of a TV screen shot.

Earlier this week, Vice News reported on protests at the House Rules Committee hearing that sent the bill to the floor for Thursday’s vote: Protestors with disabilities were handcuffed and dragged out of a House committee meeting.

So far, the bill has not been introduced in the Senate, and disability advocates will be working to keep it that way.

 

Press Release: Thirty Years of Holding It Is Long Enough

Americans with Disabilities Act, Anita Cameron, Our News & Commentary Blog,

[Editor’s Note: This press release was issued early Feb. 13th.]

Not Dead Yet, the ResistanceFOR IMMEDIATE RELEASE

Contacts:    Diane Coleman, JD 708-420-0539
Anita Cameron 720-413-9064

Thirty Years of Holding It Is Long Enough

When I saw the words “Thirty Years of Holding It Is Long Enough“, I thought immediately of the years I spent as a state lawyer in California, not drinking until 2 p.m. in the afternoon because the office bathrooms were inaccessible. This was the 1980s, and at least two laws already required access, but the state used the excuse that it was leased space so the landlord had to do the modifications. When the ADA passed, both state and landlord became responsible, no more excuses. Finally, I could have my cup of coffee like my co-workers. – Diane Coleman, JD

Why Grandma Can’t Go Out to Dinner With the Family

Not Dead Yet’s Director of Minority Outreach Anita Cameron will be joining advocates in Washington, D.C. this week to protest against H.R. 620, which is expected to be voted on in the House of Representatives. Big business is trying to bamboozle the House and the American public into supporting an unnecessary law misleadingly titled the “ADA Education and Reform Act of 2017” (H.R.620) that would make it even harder for disabled Americans who have been “holding it,” waiting to use the same restrooms, shop at the same department stores, and eat at the same restaurants as our non-disabled friends and family members, for almost 30 years!

They say the law is needed to help local “mom and pop” shops, while behind the scenes, powerful trade associations for wealthy corporations—everything from multinational hotel chains to big box stores and corporate coffee shops—are pulling the strings in an effort to gain support for regressive rollbacks to the Americans with Disabilities Act of 1990 (ADA). This opens the door to not only dismantling the ADA, but other civil rights laws as well.

Despite massive business education efforts that began as soon as the law was passed in 1990, compliance has still been inconsistent.

H.R. 620 would not solve the problems its supporters are claiming it would fix. It would not stop fraudulent lawsuits. State courts and state bar associations are already equipped to address those problems, in better ways, without denying anyone equal access, or their civil rights. They have been successfully shutting down those bad practices in many areas.

“NDY’s primary legal argument against assisted suicide laws is that they discriminate by giving some people suicide prevention and others suicide assistance based on illness and disability in violation of the ADA,” said Diane Coleman, president and CEO of Not Dead Yet.

On Wednesday, February 7, 2018, the political action committee Disability Action for America released a statement in opposition of the so-called ADA Education and Reform Act of 2017 (H.R. 620). This bill would force people with disabilities to jump through bureaucratic hoops to secure the same rights that were promised to them under the ADA 28 years ago.

Disability Action for America’s call to action highlights the importance of holding incumbents responsible for “ripping away disabled people’s rights to access public accommodations,” stating, “it’s our time to defeat and unseat elected officials who refuse to promote disability rights, and repeatedly commit disability wrongs. Last year, we exerted our power through protest: Let’s make 2018 the year that demonstrates the power of the disability vote!”

“We recognize there are problems with unscrupulous lawyers who pursue lawsuits to make a quick buck, but this bill won’t solve that problem,” said Kelly Buckland, Executive Director of the National Council on Independent Living. “We tried to work with Congress to find a real solution that won’t undercut our rights but they slammed the door in our face.”

 

Thirty Years of Holding It Is Long Enough

Americans with Disabilities Act, Our News & Commentary Blog,

When I saw the title above, I thought immediately of the years I spent as a state lawyer in California, not drinking until 2 p.m. in the afternoon because the office bathrooms were inaccessible. This was the 1980s, and at least two laws required access, but the state used the excuse that it was leased space so the landlord had to do the modifications. When the ADA passed, both state and landlord became responsible, no more excuses. Finally, I could have my cup of coffee like my co-workers.

In 1990, I was one of 104 disability rights protesters arrested in the U.S. Capitol rotunda for chanting “ADA Now” and refusing to leave. Today, Congress is threatening the right to access. Here’s what you need to know from our colleagues at the Disability Rights Education and Defense Fund. #StopHR620! – Diane Coleman, JD

[P.S. Remember, NDY’s primary legal arguments against assisted suicide laws is that they discriminate by giving some people suicide prevention and others suicide assistance based on illness and disability in violation of the ADA.]

Why Disabled Americans Oppose H.R.620 (and You Should,Too)
The House of Representatives will vote the week of Feb. 12 on H.R.620. We need your help to stop it!
Big business is trying to bamboozle the House and the American public into supporting an unnecessary law misleadingly titled the “ADA Education and Reform Act of 2017” (H.R.620) that would make it even harder for disabled Americans who have been “holding it,” waiting to use the same restrooms, shop at the same department stores, and eat at the same restaurants as our non-disabled friends and family members, for almost 30 years!
They say the law is needed to help local “mom and pop” shops, while behind the scenes, powerful trade associations for wealthy corporations—everything from multinational hotel chains to big box stores and corporate coffee shops—are pulling the strings in an effort to gain support for regressive rollbacks to the Americans with Disabilities Act of 1990 (ADA). This opens the door to not only dismantling the ADA, but other civil rights laws as well.
Please contact your House Representative (and others from your state) and encourage them to stay strong in their opposition to H.R.620 and any “notice and cure” bill, as a rollback of civil rights. SAVE THE ADA!
What You Can Do: 
Go to Contacting Congress using your zip code to find out how to reach your House representative via e-mail, phone, Facebook, Twitter, fax, etc.
Call your Representative using the U.S. Capitol Switchboard at (202) 224-3121. They will help you find your Representative’s name, and switch you to their office. If you know your Representative’s name, you can use the House of Representatives phone list.
Sample Script:
“Hello, my name is [your name]. I’m a constituent from [your state], zip code [your zip code]. I am opposed to H.R. 620 and any change to the equal access protections of the Americans with Disabilities Act. I strongly encourage Representative [add last name] to oppose any reform efforts. Thank you.”
 
Reasons To Oppose H.R.620:
  • H.R. 620 would weaken the civil rights of people with disabilities, making it harder for us to use the same restrooms, shop at the same department stores, and eat at the same restaurants as our non-disabled friends, family members, and peers.
  • Disability rights are civil rights. The ADA is a civil rights law. H.R. 620 would not only rollback important parts of the ADA, it would pose risks for other civil rights laws as well (such as Title II of the Civil Rights Act of 1964, which bars public accommodations such as hotels, restaurants, and entertainment venues from discriminating based on race; Title III of the ADA was based on this law).
  • H.R. 620 would not solve the problems its supporters are claiming it would fix. It would not stop fraudulent lawsuits. State courts and state bar associations are already equipped to address those problems, in better ways, without denying anyone equal access, or their civil rights. They have been successfully shutting down those bad practices in many areas.
Three decades of holding it is long enough! Tell your Congressional Representative to OPPOSE H.R. 620.
For more information, see https://dredf.org/hr620/ or write info@dredf.org.

Delaware Assisted Suicide Disability Amendment Is A Misdirect

"death with dignity", aid in dying, assisted suicide, Delaware, Our News & Commentary Blog, ,

The sponsor of the Delaware assisted suicide bill introduced an amendment apparently designed to address disability related concerns. It’s always good to know that disability opposition has gotten their attention, but this amendment is a total failure and completely misses the point, any point we’ve made. A disability response to the amendment is below. The battle in Delaware wages on.

***

The IDD amendment is a “clever” but deceptive attempt to address concerns about assisted suicide and people with IDD. Here is the key provision:

“(b) If the patient has a documented intellectual disability, the attending physical shall refer the patient to a licensed clinical social worker who shall ensure that the patient fully understands the information provided pursuant to § 2504B(3).  No medication to end a patient’s life in a humane and dignified manner may be prescribed unless the licensed clinical social worker has confirmed in writing to the attending physician that the patient understands the information provided pursuant to § 2504B(3).”

This indicates that people with IDD who are found to understand the (minimal) disclosures provided under the assisted suicide law are eligible.

First, nothing in the proposed bill ensures that people actually have access to the pain relief, palliative care and home and community based personal care services they need. Lack of access to services is a pervasive problem in the disability community.

Moreover, just like all of the proposed bill, it utterly fails to prevent coercion. Coercion to request lethal drugs, like any form of abuse, occurs behind closed doors. The Delaware bill, and the Oregon law on which it is based, do nothing to prevent or discover coercion, nor even to define it. The attending physician need not know the person well; the median duration of the patient-physician relationship in Oregon is 13 weeks. The witnesses to the lethal drug request form need not know the person at all, but can simply check their ID. Yet these are the people who “certify” that there is “no coercion.” Then the patient request form serves as an alibi, covering up any form of foul play and granting blanket legal immunity to the perpetrator(s).