When Access to Medication and Treatment Is a Matter of Life and Death

America boasts the best health care in the world. Often we hear stories of people coming to America for life-saving treatments. Yet every day people needlessly die in the good ol’ US of A. Compared to other nations, it’s disgusting how much death and suffering we accept. Every day, people living right next door to hospitals and pharmacies are suffering with little to no quality of life, and every day many of them die, while medications that could have made their lives better are a few yards away, locked in those buildings. If only they had the money to open the door. Those wonderful last years of life that could have been are not “gifted” to the poor. Our society acts pompous if we “gift” someone a medication so they can live. We tell them they should be humble, and expect them to grovel with gratitude. And it’s not just those without medical insurance, but those who have insurance with ridiculous copays that make treatment out of reach, or worse, insurance that refuses to cover what could help them live better, and perhaps longer. They deny you and tell you to jump through the hoops of an appeal. You die while appealing, and they win.

It’s well known that diabetics have struggled with access to insulin. Not because it is in short supply, but because the cost makes getting enough, or any, of the medication needed to live out of reach. It’s good that the price of insulin is no longer $100 per bottle. With a price cap of $35 per bottle, a diabetic will spend about $245 per month for the seven bottles that are needed to cover 30 days. That’s one medication, never mind the rest of your medications, rent, food, utilities, etc. And if you happen to need transportation, a car or public transport costs money. Many disabled and elderly diabetic patients are still going to be rationing their insulin. The move to put a cap doesn’t do enough. It costs the pharmaceutical company about $0.20 per unit. It costs them approximately $1.40 for those same seven bottles, enough for one month of treatment. Your cost for those same bottles is $245 dollars. Some diabetics are still going to be rationing their insulin. What was done by the government is nice, but they seem to think that they can walk away from the table now. Everyday people are going to die because they cannot access insulin. America doesn’t seem so great, does it?

It’s a story that is not limited to diabetes, but so many are spending all of their energy trying to access the health care they need to literally stay alive. It’s hard to explain how it feels to know that there are medications or treatments available that could bring back the ability to participate more in life.  In my case, added insult to injury is not being able to access the very care that I once helped people get as a health care provider.

For those with rare illnesses, the medication game gets even trickier. I’m one of those people, and with that comes treatments that most people will never hear of. We know all about heart disease, and how doctors can save a life with stents and medications. Never do we stop to consider access to that care. Medicine is a for-profit business, and so the rarer an issue, the more it costs to treat it. You see, they don’t get to sell much of what rare people need, so they squeeze every dime out of people. Some will live on crackers and peanut butter just to afford medication. It really does no good to have food and be dead, or feel like death, just lying in a bed, unable to eat or even engage the world.

It’s a twisted nightmare to envision the medication that keeps me alive, the treatments that allow me to see, literally see, behind a locked door with the key dangling over my head, if I could only reach it. In my 20 years of working in hospitals and ambulances, I never had to withhold a treatment while waiting for the patient’s charge card first. Being a pharmacist must be awful at times.

Due to a rare occurrence after my breast cancer, I became tamoxifen toxic. That poisonous level of medication in my body did damage to my vision. One eye has an actual hole in it. Life without medication is blurry, and at times like looking through the bottom of a glass coke bottle. The medication, Mestinon, clears out a lot of that blur. My mind becomes clearer. With stress, or flaring of other disease processes in my body, my eyes become clouded over in such a way that reading is impossible. Getting a head cold steals clarity from my eyes. Watching videos can be out of the question, as the movement on the screen makes me nauseous. At worst, I can attempt to paint my way through a day while listening to a book, or give up and go take a nap, hoping to be able to see when I am awake.

Mestinon is expensive, even in its generic form, Pyridostigmine.  It comes in two forms, a short-acting one, and a time-released long-acting version. Used together, moments of “I can’t see” could become rare, even nonexistent. The long-acting medication comes with a $500 per month price tag, and that is with insurance. The short-acting is not cheap either. If I don’t use the insurance that I pay for, and instead opt for a discount plan, I can get under the co-pay my insurance negotiated for me. It’s absolutely ridiculous. Along with not using my insurance, I will have to take the script to a grocery store pharmacy so I can get the price down to $40 dollars per month. My fifth pharmacy, mind you. I’m forced to play roulette with my medication without a pharmacist to look out for me. A pharmacist is supposed to be able to protect people from medication errors, or causing harm to themselves by mixing the wrong medications together. Your neighborhood pharmacist knew the family and medical issues. There is no way to figure out how many pharmacists at these five pharmacies actually deal with my medications. My neurologist would love to give me the time-released version of Mestinon, and the short-acting version to use when I can’t see well, as a breakthrough medication, that would save me from low vision days. Instead, I work to find ways to see through the haze. I have accepted that I will not be able to see all the time as a fact of my life.

To complicate matters, rare diseases come with comorbidities that also require treatments. For the last five years of my life, treatment has included a four-hour infusion of a medication called ketamine every month. It’s given in high doses and can cause some horrific side effects. In order to prevent that, I am put under sedation. The treatments keep the horrid symptoms of complex regional pain syndrome and small fiber neuropathy at tolerable levels. It’s not a cure; there is no cure. There is no approved treatment. CRPS has been nicknamed the “suicide disease” by physicians. Approximately 70% of patients contemplate or attempt suicide. The absolute torture it causes can be tempered by this infusion therapy. Insurance says no, calling it “off-label,” or “experimental.”  That’s all it takes for them to deny coverage. Insurance companies take a walk and refuse to cover not one dime of treatment. It’s up to the patient to figure out how to stay alive. Some providers tell their patients to do fundraisers as a last resort. They know what their patients need. They know what could be done, and they have to accept their patients being denied access. The monthly infusions run $600. No money, no med.

Our government protects insurance companies that only care about stock dividends. Entire departments within those companies do nothing all day but look for reasons to deny care. A wrong code is not corrected by working together when a simple phone call would have fixed it. Instead, the patient is denied care, or forced to cover the bill out of pocket. Legislators allow rules and laws that give insurance companies the right to override our doctors and create maddeningly convoluted systems for appealing the denial. People lose, and insurance companies just run out the clock on our care.

Essentially, they are committing eugenics in modern society. They are the “death panel” bureaucrats who try to scare us with that term; all the while knowing that they helped build it with their votes on laws protecting insurance and pharmaceutical companies. Instead of throwing away the ill into psychiatric wards and forgetting about them, we just deny them access to treatments and medications, leaving them to die a slow and painful death at home, or worse, in the streets.

Those who work and struggle with illness are simply one paycheck away from losing access to their medications. When that does happen, the medication is simply taken away. There is not even the compassion to taper them off the medication safely. You can’t taper a patient off of a medication that they cannot access. No CEOs care if ripping the treatment away means risking a heart attack, stroke, or worse, as they stare into the bottle of pills and count how many they have left. One day opening that bottle and seeing the last pill you have. The last “good” day you may have or worse the beginning of the end and time to put your affairs in order.

America has its own eugenics program,  and it’s the best money can buy.