How Much is that Pain Care in the Window?

How Much is that Pain Care in the Window?

By Terri Lewis, PhD

Terri A Lewis, PHD

Terri A. Lewis, PhD

Editor’s Note: Terri Lewis is a frequent contributor to the National Pain Report. She has decided to lead an effort in Tennessee on behalf of pain patients there.

Author note-  As a care partner to an adult son who has been denied access to health care services I know what families in Tennessee are dealing with in the current climate of healthcare.  According to recent estimates, 270,000 persons are represented in data that reflects the use of schedule II medications by Tennesseans.  We have no idea how many of the working poor have vanished from these statistics or who have given themselves up to accidents or suicide.  So, I, along with a few others, have made it my mission to address this through opening up a public dialogue.  We have pulled together an online social media support group for persons living in Tennessee who need support for themselves or a family member living with chronic pain in any form. I will diary this effort and share our progress toward establishing a seat at the planning table for Tennesseans. For more information, I can be reached through email at tal7291@yahoo.com or through twitter @tal7291.

On 5-28-2016 I addressed the following correspondence to the Tennessee Department of Health Project Manager for the Tennessee Pain Law, Dr. Mitchell Mutter. I have asked him to reply.

——

Dr. Mutter,

By regulation in 2011 (attached), TN equated the payment for health care in cash by the working poor as a red flag for access to necessary care and treatment of chronic pain care.  The directive by TN’s Board of Pharmacy to practicing pharmacists advises that cash payment is a red flag for filling prescriptions. I am sure you are aware that some pharmacies have stopped accepting cash except where a co-pay or out of pocket spend down associated with insurance is available to the patient.

You may not be aware that many individuals in this group lack the credit history to obtain bank accounts and credit cards. Without the resources to obtain bank accounts and credit cards, and a health status that facilitates employment, it is difficult to apply for even the least expensive insurance – that with the highest copayments and out of pocket expenses.  If some individuals do not have the appropriate health care history of diagnostic interactions, they may well have been denied access to disability benefits due to a lack effective interactions with health care.  I am sure you understand that women and the working poor are disproportionately impacted by these issues.

This cash payment prohibition has been generalized in many instances to PCPs and Board Certified Pain Management specialists who have used it to determine who they will serve under the current regulations.  The patient feedback from other states that have refused to expand Medicaid is much the same.  The vulnerability of this group cannot be over or understated.  As Tennessee has also made drug testing and work requirements a condition for food stamp access, we have to assume that many who need public benefits support will also need support for health care access in order to meet the work requirements.

We fought hard as service providers to reduce the influence of work comp as the poor man’s insurance carrier.  We have now set up a situation where the most desperately in need will be once again, utilizing short term employment and ‘injury’ to access care for pre-existing health care needs that can no longer be met in the primary care or emergency departments.  It should concern all of us.  As someone deeply knowledgeable about public benefits programs, disability, and the health of communities, I believe we are now set up for significant but unintended consequences.

Many Individuals are improperly stigmatized by this prohibition, and it may well serve to drive some individuals to the streets.  Has the state planning team considered that this has a deleterious impact on abuse of other substances including smoking, alcohol, borrowed prescriptions of other types, street drugs, or heroin?  Has the relationship of failed healthcare access to suicide in states without Medicaid expansion been investigated?

What guidance will the department offer to physicians and public health clinics in each county about these matters?

What alternative resources will be installed into the local community health clinics to insure that persons with chronic pain, addiction, and mental health needs will have the same opportunity to access care and treatment as a person who has Medicaid or Medicare or private insurance?

Perhaps the Community Public health clinics could offer a patient identification card that indicates the person is under the care of the local public health clinic and that their access to care should be coordinated and granted and that the cash prohibition is waived so long as they are under the care of a local community public health clinic?  Could we not set up a system to allow them priority access to services for chronic pain, substance abuse, and mental health treatment under existing behavioral health grants?  Can we implement a system of every open door – Community public health clinic, substance abuse support, chronic pain, and mental and behavioral health care from the age of 18 – 64 years of age?

A healthy community is the best investment a state can make in its’ economic development.  Locking the working poor, an already vulnerable population, out of health care simply drives up costs in other areas.

I would like to invite you to respond to these questions in writing. I will post your response into the Tennessee Chronic Pain Patient group so that they can begin to form some kind of self-care plan.

I invite you to communicate with health care providers to determine for yourself the impact of this issue on local communities.

Thank you for your efforts on behalf of Tennesseans with chronic pain.

Terri A. Lewis, PhD

Editor’s Note: Dr. Lewis also provided some significant background regarding legislation in Tennessee, which we’ve included for your review.

In 2011, Tennessee passed a piece of legislation designed to reduce activity associated with the distribution of narcotics through pill mills.  This legislation, TCA § 63-1-310 made it impossible for consumers to pay for regulated medications with cash unless they had insurance and were paying their portion as a co-pay, a co-insurance, or a deductible.  Notably, little concern was addressed for the impact of this legislation on the working poor – many of whom lack bank accounts, checks, or credit cards – the only acceptable forms of self-pay for services associated with chronic pain in Tennessee by regulation.

In 2012, in response to increasing concern about overdose deaths and illicit drug use in Tennessee, the legislature passed what amounts to one of the most restrictive pieces of drug legislation in the country.  Patterned after the state of Washington’s experiment with drug legislation, significant controls were designed to be phased in over a multi-year period with legislated controls fully implemented by July 1, 2016.  Strict requirements were placed upon prescribers, pharmacists, and consumers with dose monitoring, utilization of state-wide PDMP systems, reporting, and pharmacy distribution monitoring. Relying heavily on insurance based resources, the Act and its’ iterations impose strict limitations upon access to care for consumers utilizing a forensic model of conformance and adherence to regimens of drug testing and oversight.

Medicaid eligibility for adults in the 19 states that have still not expanding their programs is quite limited: the median income limit for parents in 2016 is just 44% of poverty, or an annual income of $8,840 a year for a family of three, and in nearly all states not expanding, childless adults remain ineligible.  Further, because the ACA envisioned low-income people receiving coverage through Medicaid, it does not provide financial assistance to people below poverty for other coverage options. As a result, in states that do not expand Medicaid, many adults fall into a “coverage gap” of having incomes above Medicaid eligibility limits but below the lower limit for Marketplace premium tax credits.  This affects an estimated 2.9 million adults, 49% of whom are working less than full time (http://kff.org/health-reform/issue-brief/the-coverage-gap-uninsured-poor-adults-in-states-that-do-not-expand-medicaid-an-update/). In Tennessee this affects an estimated 118,000 adults, of whom 51% are male, 49% of whom are female; and 98% of whom are childless.

On March 27, 2013, Governor Bill Haslam announced that he would not expand Medicaid to cover the working poor, defined as persons who earn 138 percent of the federal  poverty level or up to $15,856 per individual. Local Tennessee residents do have access to Community Public Health clinics which operate as something of an urgent care program.  These clinics are staffed by a physician and nurses, who are not allowed to provide specialty care for chronic pain, mental health issues, or substance abuse.  Consumers are provided with a list of available programs and a very small fee is collected from users who do not have access to Medicaid or Medicare.  Where Medicaid or Medicare are available, the insurance program is billed for services provided. These Community clinics are not a substitute for primary care and follow-up is limited.

In 2014, the Tennessee Board of Pharmacy encouraged Pharmacists to be alert to ‘red flags’ associated with potential abuse of prescriptions – on this list was the use of cash for payment of prescriptions. Increasing concern about drug associated deaths and abuse across the nation resulted in the adoption of a schedule of ‘red flags’  by the American Academy of Family Physicians (March, 2015), along with a coalition of stakeholder organizations representing physicians, pharmacists and pharmaceutical retailers (some of whom were under scrutiny by DEA for distribution practices).  They released a consensus document (www.nabp.net) on March 12 that highlighted the challenges and “red flag” warning signs related to prescribing and dispensing of controlled substances.  The red flags — were divided into two categories for physicians and pharmacists:

Red Flags for Pharmacists include

  1. Repeatedly dispensing “cocktailed” prescriptions
  2. No individualization of dosing by the prescriber
  3. Filling multiple prescriptions for the strongest formulations
  4. Requests for early refills
  5. Doctors located 100 miles away from pharmacy
  6. A large portion (75%) of prescriptions filled by the pharmacy were controlled substances written by one particular physician
  7. Pharmacist doesn’t reach out to other pharmacists to see why they aren’t filling the particular doctor’s prescription
  8. Patients travel in groups to the pharmacy
  9. Filling a large percentage of cash prescriptions
  10. “Verification” of a prescription as “legitimate” was not satisfied simply because the practitioner said so

Red Flags for Prescribers include

  1. Patient appears sedated, confused, intoxicated, or exhibits withdrawal symptoms
  2. Patients travel in groups and/or have unusual common factors in their relationships with each other when requesting controlled substance prescriptions on the same day
  3. Patient repeatedly resists changes in therapy despite clear evidence of adverse effects
  4. PMP (Prescription Monitoring Program) suggests evidence of “doctor shopping”
  5. Patient pressures physician to prescribe by implying or making direct threats to prescriber or staff
  6. Patient refuses to sign an opioid pain care agreement
  7. Patient fails urine toxicology screen
  8. Prescriber is aware that patient alters, forges or rewrites prescription
  9. Patient requests specific drug combinations
  10. Patient repeatedly seeks medications from ED
  11. Patient suffers unintentional or intentional overdose

In 2015, Tennessee’s legislature once again rejected Medicaid expansion, and implemented urine drug screening for all applicants for applicants for “Families First,’ which provides a small monthly stipend for qualifying families with children who meet the financial test for  poverty. Tennessee’s drug testing questionnaire for applicants for cash assistance asks three questions. If they answer “yes” to any of the questions — if they have used illegal drugs, lost or been denied a job because of drug use or had any scheduled court appearances related to drug use in the prior three months — they are asked to take a drug test.  Those who refuse to take the written test are disqualified from receiving benefits. Applicants must file a personal responsibility plan to work or volunteer in order to obtain and keep benefits.  Since implementation, only a very small percentage of users have tested positive for illicit substances raising questions about the assumptions that underlie this legislation.

Two issues have emerged for Tennessee’s working poor and those who have dropped out of looking for employment.

  • First, comprehensive health care is not available to low income families at anything that approaches a reasonable cost for those who rely on self-pay. Specialty care for low income adults over 18 is unavailable unless the costs of care are the result of eligibility for Medicaid resulting from catastrophic illness or injury. An unexpected visit to the emergency room is likely to result in undertreatment for conditions of disease associated with treatment for pain, and a visit to general sessions court when emergency room bills remain unpaid.
  • Second, those with existing but undiagnosed disabilities are not getting the routine care they need to manage their health. Since the advent of regulation, a number of primary care physicians employ gatekeeping practices that disallow self-pay strategies or make office visits very expensive.  Tests and procedures are extra expenses.  Many physician practices will not accept patients who lack insurance. In many cases, Tennessee insurers have capitated their stable of providers – which means that they have limited the number of physicians carried on their contracts who are available to consumers in an effort to control cash outgoes.  Many of these physicians carried on insurer contracts will not take new patients who have complex care requirements – especially if they are eligible for both Medicare and Medicaid.  This is due in part to the reporting requirements for managing caseload prescribing activities for persons who require schedule II narcotics.  It has been stated in more than one public forum that the utilization of schedule II narcotics are by themselves a potential red flag that brings unwelcome attention to the practitioner’s treatment activities.

So, Tennesseans increasingly find themselves “looking in the window of the pet store” when it comes to accessible, affordable healthcare.  The working poor, who are the most vulnerable to abuse, diversion, addiction, and injury, can no longer access healthcare in Tennessee.  Chronic pain as a persistent health condition associated with underlying diseases has shut the door to care for lower income persons of all ages due to the prohibition associated with application of ‘red flags’ and self-pay with cash.  Tennessee’s legislative leaders have made access to health care a matter of membership in an ‘economic class.’

Since 2011, chronic pain and self-pay prohibitions have resulted in untold numbers of individuals going without the basics – including food and utilities.  Turning to supports obtained from friends and families to handle immediate crises of care, some report that the loss of a job due to an illness or injury associated with chronic pain has plunged them into deeper poverty and reliance on the kindness of friends and neighbors who do have health care access to help them work past crises.

The statistics indicate that women are disproportionately impacted.  Emily and Jane are members of several online pain support groups.  Says “Emily,” whose name has been changed to protect her identity, her multiple health problems associated with prior surgical processes to repair teenage scoliosis are now advancing faster than she can cope.  Unable to work at 34, and denied for disability, her attempts to access chronic pain and orthopedic support have resulted in being laughed at when she asks for appointments related to what she believes are broken hardware and a deteriorating spine.  The response to her inquiries for care from providers in her region are met with ‘get some insurance.’

“Jane,” a resident in another part of the state, is dealing with Fibromyalgia, Osteoporosis, Scoliosis and more. She lost her job and her insurance in March of 2014 due to advancing disease processes.  She has been depending on the County Health Department ever since. She has been offered ibuprofen which is ineffective, and is finding it increasingly difficult to deal with her pain levels, fatigue, anxiety and depression.  Her joints have begun to swell and hurt more than normal and her blood pressure is elevated due to mitral valve prolapse. She admits to relying on the kindness of strangers for cannabis (illegal in Tennessee) as a means for temporary pain relief on the worst of days.  She has not applied for food stamps for that very reasons and regularly goes without food.  Because she has not had access to appropriate health care, she was denied when she filed for social security disability because her medical evidence was lacking.  Importantly, she would rather be working – her social isolation is a large contributor to depression.

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Authored by: Terri A Lewis, PhD.

There are 6 comments for this article
  1. Christine Taylor at 2:02 am

    I read this article and all I could do was shake my head. The ignorance shines intensely. People who are supposed to be well educated derived this entangled bureaucracy which leaves thousands suffering. I am sorry.

  2. Terri Lewis PhD at 9:07 pm

    http://law.ga.gov/3-red-flags-physicians George Attorney General’s homepage
    From Adrienne Grand-Gassaway

    3. Red Flags for Physicians

    Throughout the course of several investigations, certain consistencies have been observed and can serve as “red flags” for medical providers to alert them that the patient may not have a legitimate pain issue but are instead seeking narcotics for illegitimate reasons. It should be noted however, that any one of these “red flags” by itself does not necessarily mean that the patient is not legitimate. Some of the “red flags” are:

    The patient is from out of state
    The patient requests a specific drug
    The patient states that an alternative drug does not work
    The patient states that their previous physician closed their practice
    Prior treatment records cannot be obtained
    The patient cannot afford an MRI
    The patient presents to the appointment with an MRI
    The patient presents to the appointment with pharmacy profile in hand
    The patient(s) carpool
    The patient tests positive for illegal drugs
    Drug screen reveals no prescribed medications in the patient’s system
    The patient recites textbook symptoms
    The patient pays in cash only, no insurance
    The patient calls for early refills
    The patient’s pain level remains the same
    The patient is non-compliant with the physician’s treatment plan
    Prescriptions are routinely lost or stolen

    Note that a number of these are traceable directly to a lack of insurance, and financial resources. Others are associated with an educated patient. Yet others are associated with conditions for which there will never be much in the way of improvement. Certainly these and all other RED FLAGS SERVE ONLY TO STIGMATIZE, are biased, are not empirical or scientific, and should be tested in a court of law.

  3. M.T at 1:21 pm

    As a non-practicing attorney and a chronic pain patient (CRPS, disabled) I truly believe the only way we are to reclaim our right to medical treatment and access to all medications, including those classed opiates, is via the law itself.
    I am so upset and heartbroken for the suffering of those mentioned in this article. I am all too familiar with it all myself. Instead of trying to convince these addiction zealots, politicians, government agencies and the general public that we are truly sick it’s time to find a way to take real action that forces them to be accountable financially and by the failure to do their jobs. Ever since the term “opiate crisis” hit the media, things have gone downhill fast. I am tired of trying to understand the drug problem in this country. I am too busy worrying about my own health. Heroin has been around forever. Chronic pain patients were the easy target when the “crisis” became a trending topic. The pill mills are closed. The prescriptions written have decreased significantly. The overdoses are going up. So now what? If we don’t find a way to be taken seriously, we will all suffer more than we do already. Why are we paying the price for heroin addiction? I can’t believe the statistics are just taken as truth. The number of patients who die from doctor error is ten times that of “opiate overdose” deaths, yet that’s not a crisis? How many of us are where we are now do to the mistake of a doctor? I am. A carpal tunnel surgery, severed nerve and dishonest doctor changed my life forever. I lost everything.
    Access to prescription medication, medical care and government programs is our right. Millions of dollars have been allocated to help addicts that are taking heroin while untold thousands of legitimate pain patients are stuck in bed suffering pain and stigmatization. We should no longer even discuss addiction when advocating for pain patients as the issues must he separated! I believe there are cases for gross negligence, wrongful death, and intentional infliction of emotional distress for most patients and families. Where is the ACLU? What about our right to a private doctor – patient relationship? What about our civil rights as disabled people? Isn’t it a violation to deny care based on a disability? I am grateful for everyone trying to make a difference. The only way to really stop the madness is for legal representation of patients that hits these people where it hurts them. Enough is enough. We need real help.

  4. LINDA LENTINE at 10:55 am

    A Country is judged by how it treats the poor . This is a horrific abuse of the poor & needy of our society . Shame on those who implemented this program designed to punish , humiliate & abuse the human Rights of these people !

  5. Mark Ibsen MD at 7:53 am

    Thank you Dr Lewis, for another highly insightful article, distinguishing the accidental consequences of beurocratic and legislative solutions to problems that never existed in the first place.

    I’m writing from India
    Surrounded by grinding poverty
    And wondering “what are those Tennessee people thinking”
    Thank you for pointing out the absurdities and
    Unintended Cobsequences of driving people OUT of the health care system
    Just when they are the most vulnerable.
    We seem to be blaming the poor, the injured, and those in pain
    For problems created by our own fears.
    Don’t give up.

  6. Rk at 6:36 am

    Someone needs to sue or do a class action lawsuit.