National Council on Independent Living - Letter to House and Senate Leaders

We write this letter today on behalf of the undersigned disability rights organizations. As organizations that advocate for the civil and human rights of people with disabilities, we are highly concerned about access to appropriate treatment for both people with addiction and people in serious pain, as both pain and addiction may be disabilities under the Americans with Disabilities Act (ADA).
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National Council on Independent Living - Letter to House and Senate Leaders

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National Council on Independent Living - Letter to House and Senate Leaders - June 25, 2019

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Dear Senator McConnell, Senator Schumer, Representative Pelosi,
Representative McCarthy, Senator Alexander, Senator Murray,
Representative Pallone, and Representative Walden,

  • We write this letter today on behalf of the undersigned disability rights
    organizations. As organizations that advocate for the civil and human rights of
    people with disabilities, we are highly concerned about access to appropriate
    treatment for both people with addiction and people in serious pain, as both
    pain and addiction may be disabilities under the Americans with Disabilities
    Act (ADA).
We appreciate Congress’ work on legislation to address opioid addiction and
overdoses. We are, however, alarmed that as efforts to address opioid addiction have
moved forward, the needs of people with serious pain have been addressed
inappropriately or left out entirely.

Indeed, many policies are actually erecting new barriers to pain treatment -- barriers
that leave people with disabilities and serious health conditions unable to access pain
medication, or result in people being tapered forcibly or abruptly off of their medications
or abandoned in care entirely -- often with devastating results. These policies and the
resulting harms were addressed in April by Centers for Disease Control and Prevention
the Food and Drug Administration (FDA),ii and the Pain Management Best
Practices Inter-Agency Task Force that was created by the Comprehensive Addiction
and Recovery Act of 2016 (Inter-Agency Task Force).iii
Policies focused narrowly on redressing addiction and overdose deaths through limiting
opioid prescriptions have proliferated at an alarming pace in the past three years. They
have been enacted into law in over half of U.S. statesiv, adopted by the major pharmacy
chains and both public and private payers, and proposed in two pending federal bills.
These policies derive from the CDC’s 2016 Guideline for Prescribing Opioids for
Chronic Pain.v Nevertheless, the CDC recently stated publicly and unequivocally that
such policies, which apply its recommendations as hard limits rather than with the
clinical flexibility the guideline espouses, are – in fact – inconsistent with the
Guideline and risk harm to patient health and safety.
This harm has been highlighted in a report from the international watchdog organization,
Human Rights Watch (HRW),vii a letter to the CDC from over 300 health professionals
and three former White House drug czarsviii, a widely-publicized international
stakeholder letterix and, recently, the CDC, the Inter-Agency Task Force and the FDA.
People with chronic pain may deteriorate medically, lose their ability to function or work,
or resort to suicide or illegal substances when their medication is denied.
People with disabilities, who already face barriers to receiving healthcare on an equal
basis to others, have experienced these burdens profoundly. Individuals with disabilities
disproportionately experience serious pain, and some use opioids to manage pain from
serious or incurable conditions.x The research correlating pain and disability is
extensive: long-term pain is one of the primary causes of disability worldwide and in the
US, and pain is a primary feature in many disabling conditions. xi Recent studies show
that nearly 20 million Americans experience pain that interferes with their ability to
engage in basic life activities, a common definition of disability.xii
One-sized Policymaking
The types of one-size-fits-all policy approaches to limiting opioid prescribing which the
CDC considers a misapplication of its guideline include the following:
• Strict limits to opioid prescribing for acute pain, often of 3-7 days.
Drawn from a single sentence in a guideline about prescribing for chronic, not acute,
pain, these duration limits now exist in most major payer and pharmacy policies and
state laws. They are also the basis of two proposed federal laws. A primary reason for
the CDC’s warning against this sort of strict application by policymakers is the limited
state of available evidence for some of its recommendations. This recommendation was
rated evidence quality 4, or having poorest evidentiary support: “type 4 evidence
indicates that one has very little confidence in the effect estimate, and the true effect is
likely to be substantially different from the estimate”).xiii
The FDA is in the process of developing detailed, evidence-based guidelines focused
specifically on the different types of acute pain.xiv
Further policy developments on this
issue should await its findings.
• Strict application of dosage guidance from the CDC’s guideline.
The CDC guideline contains dosage guidance to assist doctors in starting a new, opioidnaïve individual ranging from the equivalent of 50 to 90 milligrams of morphine a day.
This recommendation is also based on low quality evidence (evidence quality 3).xv
Yet this dosage guidance has taken on a life of its own, becoming, as the CDC recently
recognized, a sort of benchmark or proxy for safe prescribing.xvi It has been translated
as a de facto limit into pharmacy and payer policies, and has been used to flag patients
as over-utilizers and physicians as over-prescribers, without any consideration of the
context of an individual’s disease or the population of individuals a physician treats.
As CDC Director Redfield recently clarified, this provision was never intended to apply
to people currently taking opioids—as the implications of altering medication for current
patients are quite different. For current patients, the Director makes clear, the only
relevant question is whether the benefits exceed the risks of the medication.xvii The final
report released by the Interagency Task Force also criticized the strict use of dosage
thresholds as unscientific and potentially harmful.
Nevertheless these numbers are now used in risk scoring algorithms by payers,
hospitals, pharmacies and law enforcement agencies, often in ways that are nontransparent. Higher-than-average dosage may automatically generate a “high-risk”
score, even for individuals who have had years of successful long-term therapy and
who exhibit no other risk factors,xix and may lead to the abrupt and inappropriate denial
of medication.
Unintended Consequences that Risk Patient Safety
The policies derived from the CDC Guideline have had unintended consequences that
risk harm to patient safety, including:
• Mandatory or abrupt tapering of individuals off of opioids and patient
According to a report issued by Human Rights Watch, the misapplication of the CDC’s
dosage threshold has resulted in doctors fearing that prescribing at higher doses will
expose them to liability. This fear has led physicians to forcibly reduce or discontinue
their patients’ opioids, even when they believed their patients were benefitting from the
therapy.xx Both Human Rights Watch and the Interagency Task Force describe a rise in
pain patient abandonment by clinicians – even among people with long-term pain who
do not use opioids.
There is little evidence to support forced or precipitous tapering and growing evidence
that it carries grave risks of harmxxi
. Recent studies suggest that even destabilizing the
dosage of a current patient may result in a fourfold increase their likelihood to suffer
opioid-related death,xxii and that many people are tapered abruptly,xxiii a practice the
FDA recently came out strongly against citing reports of serious harm that includes
increased pain, psychological distress and suicide.xxiv The CDC Director made clear that
the guideline “does not endorse mandated or abrupt dose reduction or discontinuation,”
also noting that “these actions can result in patient harm.”xxv
• Overreach to unintended populations
Another unintended consequence of misapplications of the guideline has been overreach to individuals who were never intended to be covered, such as people with cancer
or sickle cell disease who were expressly exempt from the CDC guideline but have
experienced serious barriers to receiving medication in the current policy
environment.xxvi Similarly, some policies focused on acute pain have exempted people
with chronic pain, but these exemptions too have proven insufficient to protect access to
Another recent statement from the CDC states that the guideline was never intended to
apply to people with cancer or sickle cell nor to deny access to opioid analgesics for
anyone with chronic pain.
xxvii The CDC and all professional guidelines caution doctors
not to use opioids as a first or second line of treatment, but all provide for access to
opioid analgesia where people are properly screened and other treatment modalities
have failed.
The Changing Environment
Opioid prescribing has dropped dramatically: the number of prescriptions dispensed at
pharmacies is at a 15-year lowxxviii
. Moreover, doctors are now much more reluctant to
prescribe an opioid to someone who hasn’t been exposed to them.
xxix At this juncture
and to avoid further harm, responsible prescribing that prioritizes individualized
treatment over one-size-fits-all limits should be encouraged.
The Need for Comprehensive Care
Finally, although some individuals with disabilities use opioids to manage their pain, no
single treatment modality is effective for everyone; rather it is often a combination of
treatments that allows individuals to most effectively manage their pain. For this reason,
access to the full spectrum of available treatment modalities is essential. Yet as the
Inter–Agency Task Force report found, significant administrative and logistical barriers
to the treatment of pain in a multidisciplinary or integrative way exist in the current
healthcare system. Although we have reduced opioid prescribing, there has not been a
responsive increase in access to or coverage of non-opioid treatment, and people in
pain suffer as a result. Our policies need to focus on implementing the road maps for
increasing comprehensive care that have been recommended by the Inter-Agency Task
Force and in the National Pain Strategy. xxx

In conclusion, pain and addiction are distinct problems, but the way in which they have
intersected in our recent history suggests that, if we are to avoid future emergencies,
policies addressing the crisis should consider and comprehensively address both
conditions, which are the prevalent, under-treated, and misunderstood public health
issues of our time. As we navigate this terrain, those who promulgate laws and policies
need to consider the input of people with lived experience and include people with
disabilities who are too often left out of policy discussions. Despite the strong correlation
between serious pain and disability in all population level research, for example,
persons with disabilities were omitted as a population warranting special consideration
from the recent Inter-Agency Task Force report, despite having been included in the
2016 National Pain Strategy.
We, the undersigned organizations, urge you to take our concerns and
recommendations into account and to work with us. Please feel free to contact: Kate
Nicholson ( and Lindsay Baran (, Co-Chairs
of the National Council on Independent Living (NCIL) Chronic Pain/ Opioids Task Force.
National Organizations
National Council on Independent Living
American Association of People with Disabilities
American Association on Intellectual and Developmental Disabilities
American Physical Therapy Association
Association of Programs for Rural Independent Living
Association of University Centers on Disability
Autistic Self Advocacy Network
Autistic Women & Nonbinary Network
Bazelon Center for Mental Health Law
Bloom’s Connect
Center for Public Representation

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