The image above goes with this quote by quote by Bernie:
In the wealthiest country in the history of the world, Americans should not have to live in fear that they will go bankrupt or die because they cannot afford to take the medication they need. 35 million Americans should not have to go without the medication they need because they cannot afford it.
For years I’ve suffered from a variety of autoimmune disorders, from asthma, severe allergies (including an episode last year where I was hospitalized for Anaphylaxis caused by cats), to my current diagnosis of TRAPS — Tumor necrosis factor receptor-associated periodic syndrome.
[TRAPS] is a condition characterized by recurrent episodes of fever. These fevers typically last about 3 weeks but can last from a few days to a few months. The frequency of the episodes varies greatly among affected individuals; fevers can occur anywhere between every 6 weeks to every few years. Some individuals can go many years without having a fever episode. Fever episodes usually occur spontaneously, but sometimes they can be brought on by a variety of triggers, such as minor injury, infection, stress, exercise, or hormonal changes.
During episodes of fever, people with TRAPS can have additional signs and symptoms. These include abdominal and muscle pain and a spreading skin rash, typically found on the limbs. Affected individuals may also experience puffiness or swelling in the skin around the eyes (periorbital edema); joint pain; and inflammation in various areas of the body including the eyes, heart muscle, certain joints, throat, or mucous membranes such as the moist lining of the mouth and digestive tract.
It took years for my doctor to reach this diagnosis. I get feverish symptoms on a regular basis. Untreated, they lead to abdominal pain and bloating, arthritic joint pain, inflammation of various peritoneal tissues, including painful open sores in my mouth and on my tongue, skin rashes and, in the worst case, nausea and severe vomiting requiring a hospital stay. My first severe episodes back in the mid 90’s, during which I was hospitalized numerous times, were first misdiagnosed as gastroenteritis, and I was given large doses of antibiotics until they realized my condition was inflammatory in nature rather than infectious.
Originally the gastroenterologists treating me thought I had Crohn's disease. For a period of five years I was treated with ever increasing doses of Prednisone over periods of three to four months at a time. Prednisone is a cortico-steroid similar to cortisone. Unfortunately, my body’s tolerance of that drug grew until it became more and more ineffective. Long term use of Prednisone also has some rather serious and nasty side effects, amny of which I experienced.
After I my condition worsened in 1998, surgery was my thought to be my only option. Unfortunately, when my surgeon operated in October of that year to remove parts of my intestines (the terminal ileum and a large section of my large bowel) did he discover that the inflammation of my peritoneal tissues was not consistent with a Crohn’s diagnosis.
After many years, (including trips to specialists at the mayo Clinic, the NIH and the University of North Carolina) my doctor concluded I likely had TRAPS. He was able to get authorization for a three month trial of Enbrel, one of the first new classes of autoimmune medications specifically designed for rheumatoid arthritis patients that was then coming on the market. Sadly, after that initial three month period during which I injected myself weekly, the insurance company determined that since the drug had not been approved to treat TRAPS yet — it was what they consider an off-label drug use — my authorization to use Enbrel was rescinded.
Indeed, since that time, I have not been approved for any of the current recently patented autoimmune drugs such as Humira, which is included in the list Bernie highlighted in the table posted to his Facebook page. I’ve been stuck having to rely on Prednisone. Why? Because it is a generic drug and for the time being dirt cheap.
Unfortunately, because its efficacy is lessened the more I use it, I am forced to go without medication for as long as I can stand my joint pain and other symptoms, which are constant and may appear anywhere — in my hips, knees, elbows, hands, shoulders, feet and Achilles tendon, and my gastrointestinal system among other places. I’ve also had episodes where the inflammation of the lining around my lungs led to blistering and leakage of air into my medial chest cavity — a very painful condition known as Pneumomediastinum that is often misdiagnosed initially as a heart attack.
Even with the improvements brought about by the Affordable Care Act, my insurance company still refuses to approve the use any of these more costly medications that might alleviate my suffering and get me off my dependence of Prednisone. Instead, I find myself trapped in a vicious cycle. I go off Prednisone for as long as I can, then take it for a few days whenever I feel an attack coming on.
If I have a two week period between attacks, I count myself lucky. Over the past five years I think the longest I’ve gone between attacks is somewhere between 4-6 weeks. More often, my attacks recur every other week, and during the worst periods, within a few days after I go off the Prednisone. Even when I’m am taking my corticosteriods, I am never symptom free. Often it takes a day or two for the Prednisone to kick in, days when I am very lightheaded and nauseated and must take Diazepam (generic Valium), a benzodiazepene, to keep myself from utter misery. I have no doubt there are better drugs on the market for nausea, but again, Diazapam, which comes with its own list of dangerous side effects, including addiction, depression, etc.
Even on my best days, when the Prednisone is working well, I am never completely symptom free anymore. I’’m always in pain, its just less than the worst case scenario. In addition, as I get older, I’ve noticed that my symptoms are more easily triggered by changes in the weather, stress, physical exertion and even my diet, which has been restricted to such as extent (many foods are triggers for me) that I worry about getting proper nutrition. I have to have my bone density constantly monitored and other blood factors checked on a regular basis.
Yet, despite the well established course of my illness, nothing can convince the insurance companies tom authorize any medication other than the cheapest, if most dangerous one available to me. The reason is simple — the cost. In other countries with universal health care, whether through single payer or not, this is less of an issue. I have friends in Canada, some with severe illnesses of their own, who have no problem obtaining the latest medications for their conditions. They are shocked at the cruel and barbaric nature of our our health care system, one where some clerk in an office who has never seen me, and who does not have a medical degree, can make the decision as to what medications I may or may not be allowed to take.
You see, among the developed countries in the world, only in America do we place the profit of large multinational pharmaceutical and insurance companies ahead of proper patient care. Only in America do we allow corporate suits in cubicles to make decisions about treatment choices that should properly be the sole province of the patient and his or her medical providers. Only in America, do people have to go online and plead for money to cover their health care expenses or the expenses of their loved ones, even if they already have insurance!
As much as I appreciate the effort President Obama made to get the ACA passed, I lament how little difference it has made in my life and the lives of millions of others who suffer from crippling and disabling medical conditions. We can do better. We must do better.
So far, however, I know of only one candidate who is proposing that we not limit our expectations as to the quality of health care we receive. Only one candidate has pledged to fight for a single payer system, one that could bargain with the drug companies as occurs in other countries to obtain the best prices. One that would not place barriers to access to treatment options proposed by our doctors and other health care providers. One who says no to those who say now is not the time to advocate for a better America, one which care for all its citizens more than its corporations and oligarchs.
That candidate is Bernie Sanders.
I’m not an idiot. I know that electing Bernie Sanders as President will not prove to be a panacea. I know he cannot magically wave a wand and bring about a change in the way health care is administered in this country. But I also know that no other candidate is willing to fight to make truly universal health care a priority.
I’m tired of having voted for Presidents who are beholden to corporate interests and who are either indifferent to the plight of most Americans, or too afraid to cross their corporate ‘sponsors” that they cut deals which do little to improve the lives of the people who voted for them, as opposed to the lives of those who contributed to their campaign coffers. I don’t want a person in the Oval Office who has already decided what is and what is not possible, and who has no interest in doing much for me and millions like me because the fight would be too hard, and it can’t be done anyway, and blah, blah, blah.
I want someone who is sincerely wants to improve the lives of actual living, breathing human beings rather than one who allows the bottom line of some faceless corporation to influence his or her decisions on when and where to spend a President’s political capital. Bernie Sanders is the only candidate that fits that bill.