Medicaid or Medication: Having To Choose
When you’re a writer, one of the main keys to your success is the use of your hands. You would think this would be obvious, but it’s a bit more complicated for some of us. When you’re a disabled writer living with Ehlers-Danlos Syndrome and intractable pain resulting from it, sometimes your hands fail you. In my case, my EDS causes subluxations. My finger joints frequently sublux side-to-side. It is remarkably painful and inhibits my ability to write. One of the ways to address this is the use of ring splints. They can be very inexpensive or very expensive depending on the material used, the company, and the distributor. Prior to today, I had been planning on purchasing multiples to help the subluxations of my index fingers, middle fingers, and thumbs.
One of the other ways to address this issue is to manage the pain it causes. Bear in mind that, for Ehlers-Danlos Syndrome patients, oftentimes the subluxations are acute pains on top of the already-severe chronic pain of the condition itself. Pain management is necessary for many EDS patients. I’m no exception. After many years of attempting to find the right combination of therapies, physical and medication alike, I had found the right combination that helped me manage my pain at a 5–7 on the 1–10 scale. There is no cure for my pain, but I can function. My pain management is comprised of a specified dosage of long-term opioid therapy (LTOT as it is often called), cognitive behavioral therapy (CBT), and a personalized physical therapy routine. This, again, took years to get right. When I say “right”, I don’t mean perfect. I mean that it allows me to function in this world.
Years ago, I had my dosage drastically increased to deal with what we did not know was a massive disk rupture in my lumbar spine; an acute injury that was left untreated for months and nearly killed me. After a successful operation to repair the rupture, my dosage was dropped to less than it is now. At the time, I found myself struggling to function on a day-to-day level. After losing multiple providers due to career changes and retirement, I found a provider who took the time to look over my records, see the abuse and neglect I had received at the hands of other providers and, as a result, my propensity for diminishing my own pain to survive. She also understood EDS. She put me on the regimen of medication (not just pain medication) that I’m on now. I felt and was functional for the first time in years. So, naturally, when something came along recently that threatened the reality of me being able to function, I felt intense fear and concern at the thought of losing my livelihood. I never imagined that the block in the road would be Medicaid itself.
This month marked the second month I had access to Medicaid in Colorado. I initially thought that this would be beyond beneficial to me as with most disabled people. We need healthcare coverage and Medicaid is the best immediate option. I started realizing, though, that there were going to be problems. My pharmacy began acting strangely. Initially, I thought that it was the medication itself or the dosage. I learned today that this is not the case.
It was the fact that we needed to split the prescription into two parts. This needed to be done for me to stay at my functional dosage. The reason why also had to do with Colorado’s laws on medication limits while under Medicaid coverage. According to the Colorado Department of Healthcare Policy and Financing’s PDL for April of 2024 specifically as it pertains to Colorado Medicaid:
Quantity Limits: Short-acting opioids will be limited to a total of 120 tablets per 30 days (4/day) per member for members who are not included in the opioid treatment naive policy.
Just beneath this section, there are more stipulations:
Exceptions will be made for members with a diagnosis of a terminal illness (hospice or palliative care) or sickle cell anemia. • For members who are receiving more than 120 tablets currently and who do not have a qualifying exemption diagnosis, a 6-month prior authorization can be granted via the prior authorization process for providers to taper members.
This is a direct response to the incorrect information being reported to the public and government agencies regarding the overdose epidemic. I discussed the incorrect information in detail in my piece This Isn’t About Saving Lives, It’s About Money: Pain Patients & The ‘Opioid Crisis’.
The immediate issue that we’re also encountering is the fact that the ADA very clearly states that disabled pain patients have more rights to effective treatment in their daily lives and that agencies who remove that treatment are not free from legal repercussions of the violations of these patients’ rights. Listed below is a snippet of the ADA specifically pertaining to this issue:
The disabled person who uses prescribed medication to ameliorate Disabling Intractable Pain, is thus exercising a protected right under 42 USC Ch 126. Public entities including states, counties, cities and their agencies may not discriminate against disabled persons in the provision of services. 42 USC Ch 126 Subchapter II Part A. (The FDA is exempt in it’s rule-making functions from 42 USC Ch 126, and it’s non-rulemaking functions are governed by an earlier federal law, §504 of the Rehabilitation Act. State agencies attempting to implement guidelines issued by the CDC do not enjoy this exemption and are at risk of being sued under ADA, for any resulting harm.)
To simplify this, the agencies who are implementing these medication limits are not removed from legal ramifications if their limits come coupled with harm done to a disabled pain patient. This is important to know for any resident of any state implementing medication limits that cause harm to the disabled intractable pain patient.
In case there was a doubt about what untreated chronic and intractable pain does to the body, I’ve included a very concise graphic from a pharmacist who advocates for pain patient rights regularly. In this piece, Steve directly goes into detail about what untreated pain can and does do to the human body.
Beyond the physical and mental effects of untreated pain, the United States regularly has higher medical costs due to untreated pain. According to an NCBI scholarly article authored by Nicholas B. King and Veronique Fraser in 2013:
The financial burdens of untreated chronic pain — absenteeism, income loss, healthcare costs, and workers compensation — place the same strain on countries as cancer and cardiovascular disease [9]. In the United States, the annual cost of untreated pain is reported to be between US$560–US$635 billion [17]
In their book entitled “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research”, authors Darrell J. Gaskin, Ph.D. and Patrick Richard, Ph.D., M.A. came to similar conclusions but felt that the costs were significantly higher in 2011 due to their exclusions of several critical populations. Unfortunately, one can speculate on the growth of these costs after the release of the 2016 CDC Opioid Prescribing Guidelines which saw record levels of patient abandonment, neglect, and forced tapers.
In 2022, the CDC released its revised opioid prescribing guidelines. These guidelines were said to have relaxed the strict prescribing guidelines that most states adopted after the CDC 2016 Opioid Prescribing Guidelines. In a clarifying statement released by the CDC, they stated very clearly:
..some policies and practices purportedly derived from the guideline have in fact been inconsistent with, and often go beyond, its recommendations. A consensus panel has highlighted these inconsistencies,5 which include inflexible application of recommended dosage and duration thresholds and policies that encourage hard limits and abrupt tapering of drug dosages, resulting in sudden opioid discontinuation or dismissal of patients from a physician’s practice.
They continued on regarding the misinterpretation by states and state policies that MME limits should be regulated with a sort of umbrella policy instead of utilized in individualized patient care.
..the guideline states that “Clinicians should…avoid increasing dosage to ≥90 MME [morphine milligram equivalents]/day or carefully justify a decision to titrate dosage to ≥90 MME/day.”1 This statement does not address or suggest discontinuation of opioids already prescribed at higher dosages, yet it has been used to justify abruptly stopping opioid prescriptions or coverage.
Adding to that, the reality of MME limits has been widely discussed in recent years. According to some, the MME limits that are being used to not only force-taper and vilify patients but abandon them entirely are purely and simply “junk science”. As stated below in a piece released by the CATO Institute specifically speaking about the studies used to justify MME limit usage in prescribing practices:
But these studies never even compared the doses of the various opioids that cause respiratory depression and death. The types of trials that went into the table would never be conducted today. We call this junk science.
They continued, clearly demonstrating the outcomes that many had speculated would occur:
When junk science is enacted into law, innocent people become “guilty.” In many cases, innocent physicians have ended up in prison for exceeding the 90 MME law, even though this number was never properly determined. And innocent chronic pain patients fared even worse. Many of them who had been on long‐term high‐dose opioid therapy found themselves in unbearable pain after their pain meds were cut, sometimes sharply, because their doctors were afraid of the consequences of exceeding the 90 MME limit — even when medically appropriate. In desperation, an increasing number have turned to street drugs or worse, to suicide.
I know providers who are currently incarcerated in their twilight years as a result of prescribing in good faith. To maintain one of their convictions, I was informed by a relative that the judge in their case had “ignored the Ruan ruling”.
In October of 2021, the Supreme Court, ruling in favor of two then-incarcerated providers, called into question criminal charges against providers practicing with authorization and good faith, or as Red Lawhern PhD., told Pain News Network:
“It may also make future convictions more difficult given that the decision forces DEA and other law enforcement authorities to demonstrate beyond reasonable doubt that prescribers knew their practices exceeded accepted medical standards.”
Why does all of this matter?
All of this matters because people are dying. Yes, people die. It’s something that happens in nature. However, there are deaths that naturally occur and then there are deaths that can be prevented. I believe, having advocated for the rights of patients suffering from, researched about, and existed in the realm of chronic pain and chronic illness that these are preventable deaths. As I demonstrated earlier, the cost to the country is high. The cost to the individual is higher. Lives are lost.
Allowing people to treat their bodies in order to not only have a higher quality of life, but a productive life with forward momentum is not a crime. Opiates have been used for pain control for what seems like an eternity. The synthesizing of them has been extremely beneficial in treating acute, post-operative and chronic pain.
The trend of not treating post-operative pain, though, is growing in this country to the point of people having surgery with nothing more than acetaminophen and ibuprofen post-op. The reality of untreated post-operative pain is in direct conflict with the alleviation and prevention of chronic pain. As Tong J. Gan, MD, Professor and Chairman in the Department of Anesthesiology at Stony Brook University, states clearly in his piece Poorly Controlled Postoperative Pain: Prevalence, Consequences, and Prevention:
Poorly controlled acute postoperative pain is associated with increased morbidity, functional and quality-of-life impairment, delayed recovery time, prolonged duration of opioid use, and higher health-care costs. In addition, the presence and intensity of acute pain during or after surgery is predictive of the development of chronic pain. More effective analgesic/anesthetic measures in the perioperative period are needed to prevent the progression to persistent pain.
These are just some of the factors to consider when making policies regarding dosage and limitations on pain patients. The type of pain, the patient, the comorbid conditions, the situation, and multiple other factors must be taken into account to successfully maintain the quality of life in the patient as well as alleviating the pain to a degree that we call “manageable”.
Policy-makers suggesting umbrella policies and stipulations usually results in the exclusion of large portions of the pain community, leaving many without proper care, proper analgesic methods, and oftentimes facilitates medical neglect and abandonment.
With all of this in mind, I am asking that those who are in the policy-making and law-making arenas to please consider the rest of us when making these overreaching policies. The amount of people who are suffering needlessly is beyond shocking. At this point, there is no excuse for the poor decision-making that has been implemented. The costs to the country are staggering. The costs to the individuals affected are priceless and, increasingly, permanent.
