Part I. Multiple Chronic Conditions: What Does the CMS Rule Change Mean for You?

Part I. Multiple Chronic Conditions: What Does the CMS Rule Change Mean for You?

By Terri Lewis, PhD.

(Editor’s Note: Dr. Terri Lewis has been very critical of the CDC for not requiring data collection about chronicity or context of chronic disease. This is the first of a three-part series.)

As we predicted, the Guidelines for Prescribing Opioids for Chronic Pain (Center for Disease Control, March 2016) have been widely adopted as a de facto rule by other federal agencies, insurers, state regulators and prescribers without regard for either unique patient history and characteristics or empirically gathered evidence of effectiveness. As of April 2, 2018, the Center for Medicare Services has adopted modifications to its program requirements for prescribing of opiate medications in the Part D pharmacy program, implementing the Guidelines generated by the Center for Disease Control.

Terri Lewis, PhD

In accordance with newly released rules, new thresholds for opioid doses will be established for Part D program users at 90 mg morphine equivalent units (MME) and again at 200 mg.  Any prescription at or above the 90 mg level will trigger a “safety edit” requiring pharmacists to talk with the prescribing doctor about the appropriateness of the dose. If satisfied with the explanation, the pharmacist may then override the edit and fill the prescription. Insurers will be encouraged to implement safety edits, at a much higher dose of 200 MME or more. Continued utilization above these limits will require an appeal and review.  The new policy requires all new opioid prescriptions to be limited to no more than 7 days’ supply.  Insurers will be incentivized to identify beneficiaries at high risk of addiction (possible ‘over utilizers’) and to require them to use selected prescribers or pharmacies. The reduction of insured Part D plan users in total opioid prescribing units over a 3-year period will become a quality evaluation factor for insurers contracted by CMS.

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In 2014, one in four Americans (1:4) has multiple chronic conditions, those that last a year or more and require ongoing medical attention or that limit activities of daily living.  Chronic conditions also include many rare diseases (occurring on average, at a rate of 1: 200,000 occurrences in the population), progressive illnesses that arise from a variety of causes, occur alone or together with other disease processes, and include conditions that arise from accidents and injuries.  In 2017, the number has risen to three in four Americans aged 65 and older.   This high prevalence has several underlying causes: the rapidly growing population of older adults, the increasing life expectancy associated with advances in public health and clinical medicine, and the high prevalence of some risk factors, such as tobacco use and physical inactivity. As a person’s number of chronic conditions increases, his or her risk for dying prematurely, being hospitalized, receiving conflicting advice from health care providers, and encountering iatrogenic harms from treatment encounters increases. These factors are magnified in areas with limited access to routine healthcare resources.

Beneficiaries who are residents of a long-term care facility, in hospice care or receiving palliative or end-of-life care, being treated for active or cancer-related pain are excluded from these interventions.  This determination is made through the insurer’s use of disability utilization reviews (DUR) of medical necessity criteria that is often not well understood by either physicians and patients. Given advances in care, the distinction of active treatment for cancer from other forms pain care is a distinction without a functional difference when it comes to treatment of pain.  As this regulation moves into place, it will be important for affected persons and their physicians to plan now for transition to uninterrupted care provided in accordance with changed conditions. Who is affected by this discussion?

  1. Persons with one or more identified chronic illnesses
  2. Persons with substance use, misuse, or abuse issues
  3. Persons who have complex prescribing routines that utilize multiple drug classes
  4. Persons who are underserved and do not have reliable health care relationships
  5. Family members, friends, care partners
  6. Clinicians
  7. Policy makers, regulators, insurers, contractors to insurance plans

A patchwork of state rules regarding eligibility for palliative or hospice care services and the influence of state prescribing regulations has led to widespread confusion about what kind of patients meet criteria for integrated and coordinated palliative care services that are generally devised as a way to assist persons with multiple chronic conditions to achieve services appropriate to their needs. Where do you stand in relationship to this rule?  The answer to this is “it depends.” It depends on your combination of diseases, your history of treatment, the documentation that is in your medical records, and the willingness of your physician(s) to process the necessary adjustments that will protect both your rights to care and their right to treat you.

Now is the time to prepare by conducting a review of your personal medical records in order to determine whether your care coordination needs meet medical necessity criteria for uninterrupted prescribing regimens and palliative care.  If you have a prescription history of long term use of opioids (90 MME or greater for more than 3 months in the last year) alone or in combination, it is likely that your insurer will flag your case for a disability utilization review (DUR).  You will want to be prepared for this eventuality by addressing the items that follow. Understanding the new terminology, you will hear is the first step.

12 Important Definitions

  1. A Chronic condition (CC) is a human health condition or disease that is not passed from person to person, which is persistent or otherwise long-lasting in its effects, or represents a slow disease progression that develops over time. These diseases are of long duration (more than three months) and include common diseases such as arthritis, asthma, cancer, COPD, diabetes and viral diseases such as hepatitis C and HIV/AIDS. It also includes hundreds of diseases that occur with lesser frequency (see chart). Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.  In your medical records and insurance claims they are coded as ICD-10 codes with related service subcodes (CPTs).
  2. Multiple Chronic Conditions (MCC) are those chronic conditions that last a year or more and require ongoing medical attention and coordination of medical treatment regimens across one or more body systems, or that limit activities of daily living. These might be expected to occur together as related illnesses – if one occurs, the other is likely to occur.
  3. The complex patient is one for whom contextual or environmental factors may also be required to be addressed in order for medical care to be effective:
  4. Medical complexity, including discordant conditions that require multiple medical specialties, management of chronic or intractable pain, potential medication interactions or intolerance, unexplained symptoms and cognitive issues including –
  5. Socioeconomic factors, such as the unaffordability of medication, family stressors and low levels of health literacy;
  6. Mental illness, such as depression resulting in poor medication adherence, addiction, and anxiety that confuses the clinical picture; and
  7. Behaviors and traitsthat might be expected to occur under the stressors of prolonged chronic illness like emotional lability, anger, frustration, increased demands, anxiety, depression, or feelings of hopelessness.
  8. Exacerbating factors” are those important facts that surround multiple medical conditions and include considerations like family support, housing and food security, job losses, financial status, geographic location, and independent living status.
  9. Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. The World Health Organization (WHO) defines palliative care as:
  10. provides relief from pain and other distressing symptoms;
  11. affirms life and regards dying as a normal process;
  12. intends neither to hasten or postpone death;
  13. integrates the psychological and spiritual aspects of patient care;
  14. offers a support system to help patients live as actively as possible until death;
  15. offers a support system to help the family cope during the patient’s illness and in their own bereavement;
  16. uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
  17. will enhance quality of life, and may also positively influence the course of illness;
  18. is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
  19. A Disability utilization review (DUR) is a form of administrative case review conducted by your insurer that audits the data that has been collected about you in managing your individual case enrollment in a health plans. It reviews and tracks service utilizations based on ICD-10 and CPT codes and indicators of need represented in case notes, claims made and payment, and monitoring of allowable costs and quality, risk and benefit.
  20. A Diagnosis related group (DRG) is a case categorization into a diagnosis-related group (DRG). Each DRGhas a payment weight assigned to it, based on the location of services (e.g. inpatient versus outpatient) and the regional average resources used to treat Medicare patients in that DRG. A patient may have case data that falls into multiple DRGs which are weighted for payment differently depending on a number of criteria.
  21. Medical necessity is a legal concept which refers to the health care services or products provided by a physician to a patient. It is provided for the purpose of preventing, diagnosing, treating an injury or disease in accordance with generally accepted standards of medical practice. According to Medicare.gov, the term medically necessary is defined as “health-care services or supplies needed to prevent, diagnose, or treat an illness, injury, condition, disease, or its symptoms and that meet accepted standards of medicine.” In any of those circumstances, if your condition produces debilitating symptoms or side effects, then it is also considered medically necessary to treat those. Medicare defines “medical necessity” as services or items reasonable and necessary for the diagnosis or treatment of illness or injury or to improve the functioning of a malformed body member.
  22. The Local coverage determination (LCD) of medical necessity is governed by the contract negotiated between your insurer and the Center for Medicare and Medicaid Services. The LCD must describe the circumstances under which the item or service is reasonable and necessary under the law.  Contractors shall consider a service to be reasonable and necessary if your physician determines that the service is:
    1. Safe and effective; and
    2. Appropriate, including the duration and frequency that is considered appropriate for the item or service, in terms of whether it is;
    3. Furnished in accordance with accepted standards of medical practice for the diagnosis or treatment of the patient’s condition or to improve the function of a malformed body member;
    4. Furnished in a setting appropriate to the patient’s medical needs and condition;
    5. Ordered and furnished by qualified personnel;
    6. One that meets, but does not exceed, the patient’s medical need; and
    7. At least as beneficial as an existing and available medically appropriate alternative.
  1. Medical evidence is the documentation in your records that supports your treatment plan. For a service to be considered medically necessary, it must be reasonable and necessary to diagnosis or treat patients identified medical condition(s). When submitting claims for payment, it is the diagnostic codes (ICD-10) reported with the service codes (CPTs) that tells the payer “why” a service was performed. The diagnosis reported can be the determining factor in supporting or not supporting the medical necessity of the procedure. It will be an increasingly important factor in determining whether your pharmacy will fill your prescriptions as the ICD-10 code must match the diagnostic purpose for which the medication is issued. Increasingly states are coding ICD-10 codes into the interstate Prescription Drug Monitoring System (PDMP) so that prescribing practices can be linked to prescriber decisions for care. Medical necessity is based on “evidence based clinical standards of care.”. This means that there is evidence to support a course of treatment based on a set of symptoms or other diagnostic results. Per CMS, medical necessity of a service is the overarching criterion for payment in addition to the individual requirements of a CPT code.
  2. Social determinants of health and health disparities are the financial, educational, health, social, neighborhood and community environmental factors—and their functional interrelationships—that influence the ability of individuals in their family and community to make progress toward alleviating health stressors. Indicators are examined using a life stages, life space contextual perspective. This approach recognizes that specific risk factors and determinants of health vary across the life span. Health and disease result from the accumulation (over time) of the effects of risk factors and determinants. Intervening at specific points in the life course can help reduce risk factors and promote quality of life and health. While CMS has adopted this perspective and actively promotes it, this language is notably silent in the current CMS policy document adopted on April 2, 2018 for implementation in 2019.  As a group of data factors that contribute to understanding and interpreting medical necessity, this information must be gathered at a supplemental level in the medical record in order to support medical necessity criteria for the disability utilization review (DUR).
  3. Risk versus benefit is a quantifiable analysis of the ratio of potential risk of harm associated with a course of action to possible benefits that might arise from the same or other alternative courses of action. Analysis of these risks is heavily dependent on human factors, values, and culture. A certain level of risk in our lives is accepted as necessary in order for certain benefits to develop.
  4. A Perverse incentiveis an incentive that has an unintended and undesirable result which is contrary to the interests of the incentive makers. Perverse incentives are a type of negative unintended consequence.  For instance, in an effort to prevent overdose and suicide in the population of Medicare users, insurers are incentivized to reduce prescribing. While this benefits the amount of financial outflow from the Medicare system, it perversely incentivizes the contractor to create barriers to care such as step therapies, in order to improve their evaluation for reduced prescribing among its users. Contracted participants may be harmed in the process.

In Part II of this discussion, we will discuss the topic of multiple chronic conditions (MCC), palliative care, and how these definitions affect your right to consideration and appeals under medical necessity criteria. In Part III, I will provide you with recommended steps to review your medical records, and to discuss these records with your physician(s) to be sure that the information that will be needed to continue your care can be found in your records should they be flagged for a disability utilization review (DUR) by your insurer.  Let’s all work together – physicians and patients – to make continuation of care as seamless as possible and with as little disruption as we are able to manage.

References

Center for Medicare Services (2018, Apr 2). Medicare Program; Contract Year 2019 Policy and Technical Changes to the Medicare Advantage, Medicare Cost Plan, Medicare Fee-for-Service, the Medicare Prescription Drug Benefit Programs, and the PACE Program Final Rule.  https://www.cms.gov/Medicare/Prescription-Drug-Coverage/PrescriptionDrugCovContra/Downloads/CY2019-Medicare-Advantage-Part-D-Final-Rule.pdf

Center for Disease Control (2016, March 16). Guidelines for Prescribing Opioids for Chronic Pain https://www.cdc.gov/drugoverdose/prescribing/guideline.html

Center for Disease Control. Chronic Disease Overview. (2016). Available from: http://www.cdc.gov/chronicdisease/overview/index.htm

Center for Medicare & Medicaid Services (2012). Chronic Conditions Among Medicare Beneficiaries, Chart Book 2012. [PDF – 4.85 MB] Baltimore, MD: Centers for Medicare & Medicaid Services

HHS. Multiple Chronic Conditions – A Strategic Framework: Optimum Health and Quality of Life for Individuals with Multiple Chronic Conditions. Washington, DC: US Department of Health and Human Services; (2010).

MedicineNet. Definition of Chronic Disease. (2016). Available from: http://www.medicinenet.com/script/main/art.asp?articlekey=33490

National Academies Press (2018). Health Care Utilization as a Proxy in Disability Determination, https://www.nap.edu/catalog/24969/health-care-utilization-as-a-proxy-in-disability-determination#.WsSGWb1JRtk.twitter

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Authored by: Terri A Lewis, PhD.

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18 Comments on "Part I. Multiple Chronic Conditions: What Does the CMS Rule Change Mean for You?"

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Dr Lewis, thank you so much for giving us a Plain English Version. When people are in pain their reading comprehension decreases. At least for me. I am sure we all appreciate this, Dee

Plain English version:

The times they are a changin.;

In 2019 CMS is adopt new rules for opioid prescribing that will affect Part C Advantage plans and Part D drug plans. These rules may not involve much in the way of changes for persons who use less than 90 MME on a daily basis. But you will have to check out the available plans at the time of re-enrollment.

CMS will allow Part D program managers to make substitutions among your drugs to allow for generics, cheaper medications, and different unit dose combinations. This is called step therapy.
It may or may not work for you but to continue your current routines without interruption you will have to (1) maybe change Part D providers or (2) change medications or (3) appeal your drug plan needs to keep something close to what is working for you now.

If you routinely use more than 90 MME opioids, alone or in combination with other drugs, you are likely to see changes. At 200 MME or above you will have to appeal to CMS-Medicare for a review of your medical records in order to continue with your current routine.

First, you and your physician will have to work together to prove that you need them. Second, your pharmacist can say no to filling your prescriptions if s/he believes that your prescription does not match your needs. How does your pharmacist know this at all? The information in your medical records should support the prescribing routines. If it doesn’t either your Part D provider or your insurer can reinforce changes.

You physician will have to provide that your diseases are best served by continuing your current combination of medications – with or without opioids.

This proof will be generated by the information documented in your medical records as indicated by a thorough capture of disease information, tests, procedures, prescription history, and your reports. Each year it will have to be updated to make sure that your file can pass the smell test with your insurer for ‘disability utilization review (DUR).’ This is designed to keep everyone operating on ‘the up and up.’

If this information is not in your medical file, your treatment plan will change. So, now is the time to begin to plan for this change with your physician.

This article identifies all of the definitions that your physician and you will have to pay attention to and make sure they are accounted for. By doing so, you should have a pain free transition into the modified rules for 2019.

Dr. Lewis, Please give us the codes we would need in order to work with our doctors in justifying medications or provide a link where we could find them. Our doctors are too lazy to do anything. Also, where is Part 2 and Part 3 to this article? Thanks.

the only thing that these “new rules’ have done and will do, is to deprive the people who really do need opioids to relieve their pain from getting any kind of viable treatment to counteract their pain. All the CDC, FDA, and BC/BS have done is to open the door for companies to produce and sell products that they claim will have a tremendous impact on the treatment of pain. They offer all types of new electronic “gadgets”, and of course people who are desperate for “pain relief” will spend what little money they have left to buy them. I am not saying that none of these therapies work. Unfortunately the few people who it does work for are not enough to have the the general public “put all their eggs in one basket”. I suffer from Multiple Chronic Conditions and I am currently 63 years old. I will be looking for Part D coverage as well, but I fear that by the time I need it, the restrictions will be much worse. What do we do when this happens? Since when is it up to a pharmacist to agree or disagree whether the doctor has ordered the right medication or how much? These agencies that were developed to HELP the public now want Absolute Power over the same. I find this entire situation to be, as the military so fondly puts it , “A CLUSTER-F#$@”, I THINK THAT THAT IS AN UNDERSTATEMENT!

I understand all the definitions that appear to be beneficial for patients but, in reality are being totally ignored. It should not according to definitions of say medically neccessary, have to be politicized to tattempt to rally our elect to pressure the medical agency experts into passing law or at least making a decision to restore effective pain management when opioid medications are deemed appropriate for patients. Patients’ documentation that prove no harm….is being done to patients that need opioid medication responsibly prescribed and responsibly used by the patient means absolutely…….nothing. Our veterans and civilians alike have ALL been deemed as possible, possible candidates to abuse their medication but I really believe we have been adjudicated as “possible” people that will re-distribute our medication causing harm. Documentation, records with best possible proof that the patients are using our medication as prescribed. Documentation proving with “pill counts” and urine screening to find other substances in our bloodstream some of us for decades without ONE “rule” for using opioid medication broken. WHO in the hell decided that a unilateral dosage of 100 mgs of “morphine equivalent” is sufficient for ALL patients. WHO did the study to validate a “conversion chart” to morphine equivalent. HOW can such a study be accurate with so many variables which should be taken into account with any dosage of any medicarion that WILL vary from patient to patient as per each individuals chemistry, our body individuality as to how effective a particular dosage is. A unilateral far inefficient dosage of opioid medication for pain management when it is the last effective mens to remain out of torture can NOT be the “same” for every patient. The second problem I have with CDC “policy” is that the medication “conversion chart” is so rediculous. What medication…..and dosage may get the best results for one individual patient, may NOT be the best effective medication for a different patient. WHERE is the “science” behind the “conversion chart” used by CDC now wreaking such havoc within the pain managment community. Dot/Gov will only follow the “experts” opinion. How about the expert opinion of patients that have successfully, safely used prescribed opiods medication for years and many for decades. The absolute detrimental results of 100 mme daily is published as gospel. Drug abuse and ovedose and pain mangement with opioid medication can NOT be combined

I better pay attention, this is going to affect me in a hugh way. I’m starting part B Medicare this month and trying to find a part D that will meet my needs. In palliative care for many years with a cervical spine injury, life has been very hard since my fight for getting medicine back after being cut off of oxycontin by insurance company last year. I’m suffering but have been put back on the lower dose recommendation. Now switch over to Medicare, oh boy.

I also was left feeling ignorant. Plain English would some one please speak in simple terms???? I am intelligent, well educated and apparently an ignoramus too!

Genocide is not just a term for actions in other countries by dictatorial maniacs. Sheep gotta follow, wolves gotta eat. Guess I need to learn how to baaaaa as my growl is weakening with pain.

I read all this, and it increases my resolve. I choose to no longer have medical intervention in my life.
I am no longer a candidate for surgery, though after the last time, I would not be capable of allowing it anyway.
I will not take their drugs either. They are systematically giving us a death sentence anyway.
I am sure they will do away with my favorite herb, kratom, but thank God the attitude is changing about Cannabis. Now I am searching my yard for wild lettuce.
Its been 4 years since the back thing. I read these stories and I remember how agonizing the pain was, and what it was like day after day. The CDC has no idea nor do they care.
At the moment, my pain is under control. As time passes, it will not be. When that time comes, I will take care of it. I just cannot bring myself to jump through the hoops of Western Medicine. It isn’t worth it.

We all know the truth though, that no one is exempt, hospice care is now denying pain medication, surgery patients and cancer patients, IT HAS STOPPED the treatment of pain for everyone, but they go the extra mile to save addicts, suggestion citizens carry a “rescue” just in case they see someone ODing, were the hell is the government , for kids and adults with severe allergies, that can die, WITH NO choice, no one suggest helping them, I read another sob story, a addict wanting care, sympathy, and support after he has OD 7 TIMES, YES 7 TIMES, he was complaining that his medication was not adequate enough and was demanding better care. And the AGENCY gave him what he wanted, even after od8ng in treatment. This is such an absolute joke, we throw drunk drivers in jail, especially if they kill somone,.but we give addicts a couple million dollar memorial, wht not give the drunk driver a memorial? I see zNO DIFFERENCE , so why only give 1 set of addicts,? Then they blame the alcohol makers, sue them and get their name on a plaque for breaking the law, meanwhile people are dying and suffering in agony, pain suicides up, and our president uses fake numbers and information to make a memorial for crimminals,.(not all are ) I know this, but WTF how about a memorial for suicide pain, why not s cancer memorial, I’m sure families would appreciate their child name dedicated to them in WASHINGTON, a child who died for no fault of their own. NOPE, this is a absolute travesty

I believe I have a physician who will work with me in order to continue my prescriptions thank goodness. I cannot believe that the consideration of chronic pain patients were not understood while making these new regulations. The physician and patient should be the determining ones, not the insurance co., not the pharmacist, not the CDC, or anyone else. This is an attack on chronic pain patients and their well being, quality of life. I just hope others don’t suffer because of this, or worse, talk of suicide because of their pain. Another point is that there are extremely painful conditions other than cancer-related, or end of life-related. What’s wrong with these people who make up these guidelines, don'[t they understand this?

Thank you for all you do, including this post. I went to my pain physician yesterday before I knew anything about this and had mentioned that my intense and constant anxiety about this crisis had been slightly better because I read that there was a small victory in that Medicare patients were NOT going to have to pay out of pocket for any pain meds above 90 MME. It was then that I felt like I received a death sentence- my physician told me that the head clinic physician showed all the doctors a CMS policy just the day before and beginning June 2019 there will be no prescriptions over 90 MME – period. I asked if there were exceptions if physicians were to document that a patient needs over 90 MME (as the last several years my excruciating pain has been managed the best it has ever been since 2006 when an MS flare caused by severe sepsis from a mismanaged c-section ended with me crushing vertebrae two weeks postpartum, then made worse by a vertebroplasty I was urged to have being botched, leaving leaked, then hardened, medical cement in my disc space and next vertebrae where it shouldn’t be. I’ve tried every non pharmaceutical therapy, including a neurostimulator implant that does not touch my pain. This is a brief synopsis) l was told no, that there were no exceptions except cancer and palliative care. Is this accurate? If so, I have a year to live because even though I don’t have cancer, without meds, my pain is so severe I cannot move, shower, eat, etc. It is unbearable to live. I do not want to leave my husband and now 12 yr old son, I want to live. Like many who come to this site,I’ve used opiates responsibly for years to have some semblance of a life – I’m not an addict and don’t want my life obliterated because of addict behaviors. This post gives me hope that through documentation and doctors’ testaments we can keep receiving life saving pain management, but yesterday, my doctor seemed sure the rule was going to be finite. ????? I am confused and terrified, as I am sure many CPP’s are right now.

We need more physicians educated in the field of pain management. There are some practices that are staffed by nurse practioners and owned by physicians who are not on site. Some of these practices will not discuss their contracts with you until you sign the contract. The contracts appear to be cut and pasted but in the end they make no sense. It would seem that Medicare and Medicaid should establish the appropriate ratios of MD s with pain certification and chronic pain patients in areas of greatest need.

It will be many years until I’m eligible for Medicare, but my mother is disabled and Medicare is her secondary. I’m thankful for this information!

This all does feel so dehumanizing – everything about how we’re treated is and it’s becoming more and moreso. We’re in a factory, being processed… There’s no individuality – we all fit the same mold and should be treated alike. Doctors are losing ground. We’re all being beaten down.

Oppressed.

Effectively, taking away medication that gives us a quality of life is a form of oppression. We’re being treated like drug addicts – it’s discrimination. Our healthcare is not between us, and our doctors. It is between politicians and the media frenzy.

Even my friends are now doctors. The fact that I take ANY medication for pain means I get the side-eye and the well-meaning advice.

Amidst all this, we’re expected not to be emotional. I actually take pain medications before my doctor appointments because I know I need to be clear-thinking and not betray the fear/frustration. I know people are losing access to their medications. I know my doctor’s decisions will determine whether I can continue to work or if my quality of life will decline… What I get to keep in my life and what’s taken away (a hobby that’s almost beyond my reach as it is, a modest social life, my job?, uh, sleep…).

I already keep my life simple as an adaptation to chronic health issues. No husband, no kids. I am glad to have a small home to maintain. I can’t drive due to fatigue. I’ve given up a lot my doctor surely doesn’t realize. A lot of the effects of this illness are private like that. I don’t have the luxury of a different reality right now. I am grateful for what I have, but I don’t know how much more I can tolerate losing. My access to medication still allows me things that give meaning to my life — especially my job. It’s tenuous.

The people who are making decisions for us… They don’t know. It isn’t just about pain. It’s about being able to live and do things that give life meaning despite pain, fatigue, cognitive effects of illness.

Thank you for this … I never would have known this critical information had it not been for you putting it here! Many many thanks!

Great article! Wonderfully informative.

I just do not understand the focus on opiods when alcohol is legal and kills more people every year. The facts are the facts. My country is betraying me! THIS IS NOT FAIR! WE NEED TO GO TO DC LIKE THE TEACHERS DID!

I’m absolutely dumbfounded, although I shouldn’t be, since the grueling efforts to stop the CDC years ago, which I fought hard against with multiple organizations on Twitter (& signed dockets when allowed) with you Terri. Anything I say here is redundant & won’t help change anything but I’m so grateful for your dedication & hard work, without ceasing, to not only fight & rally us all into action, but also for explaining the details that many may not understand due to our MCC’s. I entered palliative care last year & out of the untold amount of Drs I’ve seen over the past 30 years, this is THE only one who has never once treated me as
drug-seeking, a junkie or refusing to treat me with humane pain relief in the hospital. I said years ago that what was happening to CPP’s is genocide.. and now this just adds another layer of confirmation for what’s really happening to all of us including our veterans.
The big health insurers in Pennsylvania have been running commercials on their plans to “enrich health by taking measures to address the opioid epidemic” & I knew what this meant. A local TV news show has been doing a year long “Look at the opioid crisis” from heroin overdoses but my efforts to get my story told are to no avail.
I intend on filing suit against 8 doctors who not only nearly killed me multiple times last year by delaying treatment that made me septic in my bloodstream on 3 separate occasions (2 were from hospital acquired infection), my blood pressure was so high for long periods of time from the pain I was in, an aneurysm formed in my brain stem…all because of being a long term chronic pain patient.
I have permanent damage in multiple areas & will never be the same again since brain surgery.
If the government, insurers etc are going to continue this path then medical cannabis must be LEGALIZED NATIONALLY. Insurers must reimburse the outrageous cost of getting your card & monthly medicine. I’m so disgusted & tired of how the sickest people are made to suffer in ways a veterinarian would put an animal to sleep for lesser diseases. I can only keep fighting with you & NPP & pray for all of us.

First of all I thought this article which was rather important was very difficult to read. Maybe I’m not smart enough, but I think it could have been dumbed down a little bit. Secondly I don’t know what to believe because I heard that the 7-Day thing with not going to happen that we succeeded in stopping that plan. In fact it was my understanding that the 90 MME was also not approved. So now I don’t know who to believe!