(View this article on “The Mighty” here.)

I want to cover an issue that was born from illicit drugs, but has found a scapegoat in chronic, intractable pain patients. Patients stable in palliative care suddenly become the boss of a drug cartel. New limits on prescription access affecting arguably the sickest citizens among us. This is a unique problem affecting a fraction of those with incurable disorders, but make no mistake, it continues to cost lives. We need doctors making choices for patients, not legislators looking for the quick fix and a fast track to winning the next election.

In order to curb opiate use and abuse, in some instances, laws were passed in haste. Federal stupidity in 2016, in the form of a recommendation by the CDC, caused a massive shift in care of the chronically ill. New restrictions on all patients who are prescribed controlled medications, not just those with severe incurables, cost thousands of lives. It’s an example of a good idea gone bad. This overreach born from illicit fentanyl use limits people to only one pharmacy, regardless of the individual patient’s needs or lack of prescription medication coverage. This makes real people choose which medications they can afford to fill, and which medications they will ration, or just do without. Limiting pharmacies has created an unfair financial burden on people most likely living on fixed incomes, with insufficient prescription drug plans. Large companies, like Goodrx, can negotiate prices that often dwarf insurance plans with high premiums, out of pocket expenses, and flat out refusal to cover life-saving medications.

We hear all too often how legislators are trying to look out for patients, by putting blanket controls on how people can fill their prescriptions. When a pain patient is prescribed any controlled substance currently, they’re mandated to sign what is called a pain contract. It’s an agreement meant to protect providers and patients, or at least that is the garbage reason used to do it, as it actually causes chronic pain patients to be treated as criminal drug addicts. It micromanages a patient’s care, with no consideration for ailment or individual life situations. Common sense takes a back seat in the face of ill-placed and exaggerated fear.

The penalty for violating this contract can, and often does, result in loss of access to medical care and medications. In other words, they fire you from the practice and refuse to see you in the office. Some have even refused to taper, cutting off medication refills, leaving someone to suffer what can only be described as torture. The contracts have a lot of built in restrictions, besides limiting your use of pharmacies to one pharmacy. On the surface, that sounds reasonable, and if the restriction was only on the control medications, maybe it would work better. However, it’s not, and depending on providers, you may simply be stuck between the proverbial rock and a hard place. You could be trading treatment for one illness over another. How do you make such a choice?

Not all pharmacies are alike, as they are not equal in what they charge for a given medication. Here in the United States, people have to shop around for their medications. Insurance companies choose what your copay is, in part based on where you fill the script. It truly can become a situation of not enough money, so you skip medication. A harsh reality of how medical care in the United States creates population controls without trying. The reality is rarely kind to those with financial limitations, to accompany their incurable ailment and mounting medical bills.

I now have four pharmacies. I only want to have one, but I can’t afford that. I have had to give up on access to medication. This year medications are more expensive, and my list of pharmacies has grown. My care is complex enough without having to deal with four different pharmacies. A list of pharmacists I could never know, and worse, they never get to know me. I really do miss that personalized care that I use to have access to.

Being forced to shop this way for life-extending medications is not only awful, it’s dangerous. I used to have one pharmacy, with all my allergies and prescription history known. Heck, the pharmacist knew me not just by name, but by face. The pharmacist would at times warn me if there was a contraindication with one of my medications, especially over the counter medications.

Now I have far too many pharmacists. I practically have a football team between the pharmacies. It can be a bear to ensure everything refills correctly. If I have a question I have to try to tell them my medical history and rare diseases that they have never heard of, in less than 60 seconds. My complexity only makes that 100 times worse. It’s awful to depend on someone to get things right when you are introducing a disease that they may not have even heard of. Yes, there have been times when they have said, “I don’t know. I’ve never heard of it.” If not them, who do you find the answers from?

The point of trying to prevent doctor shopping, and attempts to fill a prescription fraudulently, has now caused a stage four cancer patient to post videos of how they were denied their prescription, because they dared to try to go to a cheaper pharmacy, or worse, the one that has the medication in stock. Some pharmacists have become so militant, they have forgotten to be human. That cancer patient passed away not long ago. Her last bit of time was, in part, crying that the pharmacist considered her a drug seeker; how cruel. It’s not the incurable pain patient trying to pull one over on a pharmacist; it’s a small number of people who come into pharmacies with ill intent. Most of the people who come are simply trying to live longer and suffer less. Sometimes I feel as if humanity has been removed from us, and replaced with cold, hard video screens. It feels as if the world no longer has tolerance for those of us unable to keep up. Where now often denied beneficial treatments and medications, because we have become too expensive to keep alive. If that sounds harsh, just imagine how it feels as it happens over and over again to you.

In my case, I am not on any controlled medications, so I am lucky to be able to shop around to get the cheapest price I can find, in order to keep access to the very medications that make staying alive possible. It makes getting out of bed without help, and walking down the stairs doable. If I was forced like others to only have my medications filled at one designated pharmacy, I would have to start rationing, if not be completely unable to take some of my medications. There is a massive difference in price amongst all the various pharmacies, because everyone has a pharmacy now. The grocery store, mail order companies, and even Amazon have an online pharmacy now, all setting different prices for the same medications. So many of them are large companies, who leave little to no room for pharmacists to get to know their patients. Yet they make decisions so harsh it will continue to cause unnecessary death. Worse, patients suffer and slowly lose parts of their humanity to humiliation and isolation. People don’t want to hang out with the sick. Some are embarrassed by our illnesses. I’ve personally had my heart broken from that very thing. NO ONE is immune.

None of this will change until the government stops creating overreaching laws on complex medical matters. Providers, such as pharmacists, need a reeducation in treating the whole person, not just dishing out pills. It’s a power over life that no one person should be able to control solely. Until this changes, we’re going to continue to see memorialized social media pages for those lost by undertreated or untreated ailments, a large number to suicide.

It’s a painful truth, but should really serve as a wake-up call. I know how I feel when thoughts creep in about feeling alone, wishing for the TV movie family that rallies around you. It’s just not the reality which many live with. Chronic pain patients are simply silenced in the face of an inescapable hell. The constant pain, treatments, side effects, missing parts of life. Having to negotiate medications and keep track of various pharmacies and refill dates, along with the near weekly medical appointments, is exhausting. It’s the life of those who cannot be cured.

The attempt to regulate health care has led to increased suicides. People have been left feeling as if no one values them, that they are too costly to keep alive. Strangers playing roulette with lives in pharmacies. People are called acceptable losses or collateral damage. No one should be tossed aside, and made to feel unworthy of life itself. We must demand change from our legislators, medical providers, and demand dignity in our pharmacies. No one should draw their last breath, having been made to feel that they’re not worth the money for the medicines needed to keep them alive.