SURVIVING WHEN YOU CAN’T PAY FOR DRUGS – A GUEST POST

Case Management

When you are diagnosed with an illness for which there is no cure, but long time survival is possible, you quickly learn that the most important case manager you will ever have is yourself.  You need to learn everything you can to survive — legally and, if necessary, illegally.  You tend to drop your concern for law when your life is at stake, especially when you will “First, do no harm” (Primum non nocere), the oath of doctors and others helping people survive.

Support group members will urge you to not merely educate yourself about the disease, but to get a good case manager. After you understand all your treatment options and the decisions you will have to make, your case manager can help you navigate the maze of health care bureaucracy. This is important for everyone, whether or not they have a job or insurance. Anyone can be taken advantage of by the system.

Illustration: NBC News

Early after an HIV positive diagnosis, I was laid off from the job which provided my health insurance.  The fight to start COBRA coverage was immediate.  Many states have programs to help pay for continued health insurance under COBRA (Consolidated Omnibus Budget Reconciliation Act).  There may also be other drug assistance programs because the cost of medication, even with insurance, may be out of reach for those without jobs and even those with minimal jobs.

While state help was being lined up, my well-known insurance company was deciding whether to grant continued insurance.  Their basic argument was they were headquartered in another state and therefore were following other guidelines. The case manager got experienced lawyers familiar with this sort of trick to deal with the insurance company.  They finally offered COBRA and the state came through with payments.  This was the value of a knowledgeable case manager, but the process took time.

A Re-Purpose

The interval during the battle for coverage brought other concerns.  I knew I might be able to afford the multiple drugs for a month or two, but the extreme costs would quickly wipe me out.  That is when I learned about “other” assistance.  This kind of assistance is spoken of quietly by those who are desperate, but can be trusted.  It is the kind of help that takes place all over our region, and probably across the country too.

My case manager told me he might be able to help with some drugs, but not all.  When I came for an appointment one day, he told me to wait. He went to a pharmacy and came back with some of the medication I needed.  He took a black marker and carefully crossed out a name and gave it to me. He said it was mine now and not to say anything to anyone about this.  Ever. I left and kept quiet for years.  The agency he worked at is gone now, and I don’t know what happened to the case manager.

He had gone to a pharmacy that had secretly offered help.  When a patient did not pick up their HIV drugs for over a month, they did not put the item back in stock, but held it on the side for emergencies. If the item had been covered already by insurance, and the customer did not pick it up, they felt free to hand it to another. The drug company was paid and the insurance company was none the wiser.  This tactic is illegal, but many will run the risk to save lives.

Helping One Another

Not all managers are so resourceful or willing to run such risks.  Strictly speaking, it is against the law — dispensing drugs without a license.  There are individuals in support groups who are willing to assist with drugs, when no one else can.  For a while, there was an agency here that had acted as a go between to pass drugs from one patient to another.

In support groups, some would mention how they could bring unopened bottles of HIV medicine to the agency and they would keep it for those in need. Then if a member could prove they had a prescription for a particular drug the agency had on hand, they would give a month or two of the drug to the client.  That agency no longer does this or will even admit they did it for many years.  They could be shut down just like the agency referred to above.

Drugs are collected in many ways.  If someone who has gotten a three-month supply of medication, but then the drug was changed by his doctor, he would bring the unopened bottles to the agency to lock up in secret. If someone passed away, a mate might turn in unopened items to help someone else.

The fear of being caught helping to save lives has led many away from this type of help. Patients are left to do what they can for each other via contacts in support groups — or even “on the streets.”  Those fighting the disease can not imagine throwing out drugs that can help others.  Turning in drugs to be destroyed seems a bigger crime than “dispensing drugs without a license” for those who hold a prescription for a life-saving drug.

“Healing those who seek my help”

With the loss of agencies willing to help patients get drugs, legally or illegally, some doctors are willing to fill the void. There are those who collect back unopened drugs so others who can not afford them will benefit.  A doctor knows the prescription of a patient and will generally learn in private conversation who needs help.  If the drugs have already been bought and paid for, it seems a humane thing to do. In this country, this kind of help is unfortunately necessary.

The High Cost of Drugs

HIV drugs come in several classes and a patient is likely to take one or more from each of 3 or 4 groups per day.  Few drugs have generics and even those are expensive.  The retail cost in the United States for three or four of these drugs could run 4 to 5 thousand dollars per month.  Patients receiving various assistance programs are terrified of health care “reform.”  Out of necessity, we help each other.

When I was in Germany and discovered I had miscounted a medication. Of course I was panic-stricken.  I went to a pharmacy, who sent me to a local physician who spoke English.  I told her of my plight. When she was satisfied I had demonstrated I had such a prescription (I always bring proof if I travel), she wrote a new prescription. I went back to the pharmacy, prepared to charge to my credit card an outrageous amount due to my miscalculation. I knew my insurance card would not be honored overseas. The drug was reasonably priced, about one tenth what it costs retail here.

Aside from one doctor I know of, many who would otherwise be willing to help with drugs and health care services have been driven away –or at least underground.  Americans do not have the protections other countries around the world offer. In the absence of legal support, we do what we can to help everyone — not just with advice, but with life-saving drugs denied to many because they can’t afford them.


People without insurance die.
This is not a political opinion. It is a fact. 

NOTE: Since the author isn’t available to answer questions, comments are “off.”  I can’t answer questions because I don’t have any answers, sorry.

DOOMED – Marilyn Armstrong

Weekly Word Prompt: ATM Germs


We are doomed.

Yesterday — or was it the day before? — we got our super flu shots. These are hyped up uber-potent shots they give to us older folks because we are more likely to get sick than younger people. Also, we are more likely to die from the flu because we have other issues — asthma, blood pressure, and heart problems. Sinus problems. Stomach problems. Fibromyalgia. MS. Cancer.

In fact, I don’t know why we don’t just die and give the world a break. Sheesh.

Discovering that in addition to the usual distributors of disease — other people, especially very young people — we can now worry about everything we touch including the ATM machine.

Don’t forget your flu shot …

Really? As if the handles on the shopping cart and whatever my granddaughter has on her clothing isn’t bad enough, now I have to stress over ATM machines? Not that I actually use the ATM machine. I won’t make a deposit without going to an actual person in the bank. I want a paper receipt.

Call me crazy, but once, a long time ago in a bank since absorbed by some larger bank — probably by now it’s all Bank of America — they lost a deposit I put through in an envelope that included an official deposit slip.

It got straightened out but left me with a firm belief for any deposit made by check or cash I want a written, signed piece of paper from a person.

We are doomed. No matter how hard we try, something will get us.

We don’t go out much. When we do, we usually get sick. It’s like the slow cars that pull out in front of us while we are driving. I’m sure these cars are told when to appear by drones from the super-slow drivers’ department. Meanwhile, somewhere in the air, there’s a germ-laden drone.


“Look! It’s the Armstrongs! Prepare to disperse germs!”

Mostly, Garry and I have been exhausted. All the time. For me, this typically means fibromyalgia. Garry had surgery in July and I have a feeling that this might have triggered the same thing for him. Women are more typically fibromyalgia victims, but men are not excluded.

Then again, maybe we aren’t sick at all. Maybe we just aren’t getting enough sleep. The weather has been like hot soup with interludes of rain.  Duke is shedding like a small furry hurricane. Our sinuses and eyes don’t like the ragweed and Garry is getting used to carrying around a lot of electronics inside his head.

So maybe it’s all allergies and getting even older.

When we went for our flu shots, they always ask if you think you might be sick. At our age, that’s not an easy question to answer. Maybe we are fine or as fine as we ever are. But, maybe we aren’t fine.

Am I exhausted from all the running around to doctors and hospitals or because I’m coming down with something? Am I recovering from the major house cleaning last week? Or am I worn out because our dogs are faster, friskier, and more impassioned about balls that squeak than I could ever be?

Don’t you wish you could get that enthusiastic about a big green tennis ball that squeaks? Don’t you wish you could bite something hard enough to make it squeak?

CAN I COMPETE WITH A ZING? – Marilyn Armstrong

My Brain Has Gone Off-Duty


I feel like my brain is too tired to go on.

You know how you feel when your muscles have seized up and you simply can’t walk any further? That is how my brain feels. As if it has walked too many miles and it has had quite enough.

Too much thinking.

Too much planning.

Too much organizing.

Too many bizarre questions to answer.

Too many strange problems to solve.

Too many “on hold” phone calls with no return calls, disconnects, no doctor or practitioner to talk to.

Too many issues to deal with.

Too few answers to too many questions.

Today, I’m crabby, out of answers, and tired of being told to call some other (non-answering) number that will connect me with yet another person who thinks I should speak to the doctor but won’t connect me to him or a colleague.

University of Medicine and roads

So competition with my old zing? It isn’t working today. I lack any kind of zing and frankly, going into a long siege of competition to get hold of the doctor or ANY doctor, is more than I can handle.

I am going to make some coffee. Drink some coffee, and brood on why I hate this hospital, even though they are the nicest people in the world. Hard to be both, isn’t it?

You’d think that.

FOWC with Fandango — Compete
RDP # 53 – Zing

AN APPALLING MEDICAL HISTORY – BY ELLIN CURLEY

My mother was plagued by serious medical problems, literally from birth, into her 50’s. She almost died several times. It made her a real fighter. She never let her physical limitations limit her life and always had a positive attitude.

Infants are rarely born with infections. My mom was born with one — not sure which. Maybe an ear infection. When she was three, she contracted polio. She recovered, but her legs were severely damaged. She had to be put into leg braces, which she wore till the age of 13. She also had to relearn how to walk.

Mom at about two years old

At around age five or six, Mom developed a severe ear infection that required painful and traumatic draining procedures every few days. She eventually needed surgery. She had half her head shaved and had to wear a big white bandage around her head for six months. Not so great for her ego at school.

At age 18, at college, she took a drug commonly used in the 1930’s to stay awake and focused when she needed to pull all-nighters. This was often since she had terrible study habits and an active social life. She developed a side effect of the drug and her white blood cells started to die off. The doctors at her college in Wisconsin told my grandmother to pick Mom up and take her home to die.

Mom at college

My grandmother was not going to give up on her daughter. Instead, she found a doctor who gave my Mom typhoid fever — a highly unorthodox attempt to stimulate her white blood cells to start reproducing again. The bold, risky treatment plan worked, but Mom was an invalid for a year, unable to leave her house.

At 20 and married to the doctor who had saved her life, Mom got pregnant. She delivered a five month stillborn boy after 18 hours of labor. After trying to get pregnant again for the next eight years, she was told she could never have children again. As a side note – my Dad, her second husband after being widowed, was also told that he was sterile. So I was quite an unexpected surprise. In fact, when Mom got pregnant with me, her gynecologist gave her shots to bring on her missed periods. It didn’t even occur to him that she could be pregnant.

After about eight relatively healthy years — except for migraines — Mom got rheumatic fever. She was sick and it affected her heart. She was an invalid for two years this time. She didn’t leave her bedroom for a year or the house for a second year. Her first husband, a physician, jokingly said that she was made of ‘biological junk.’

Mom at around 28 or 29

Before she got sick, Mom had been studying acting along with fellow students like Stella Adler, Karl Malden, Susan Strasberg and Buddy Epson. I believe that Lee Strasberg was one of her teachers. She had caught the eye of a Hollywood producer. He wanted Mom and her fellow student and friend, Judy Tuvim, to go to LA for a screen test. But first they were both told to lose ten pounds for the camera. Mom had just started her diet when she got sick.

Her friend, Judy, went on to become Judy Holliday. She ‘made it big’ and starred in Broadway version of “Born Yesterday” and the musical ‘The Bells Are Ringing,” then again in the Hollywood versions. Unfortunately Judy’s career was cut short. She died at 44 of breast cancer.

Professional Head Shot

Mom was left with scar tissue on her heart, which in those days, meant permanent heart damage. She was told she could no longer act, dance, play tennis or do anything strenuous. She had to lead a more sedentary life from then on. She couldn’t continue in acting so she decided to go back to school, finish college and study psychology — due to the influence of her former therapist and family friend, Abram Kardiner, who was soon to become my father.

Shortly after she started school again, her first husband died of a massive heart attack at the age of 43. She was 29. Three years later, she married my father and had me. When I was five or six and she was 38 or 39 at which time she was diagnosed with  lupus erythematosus, a chronic inflammatory disease and it affected her heart. Again. She was warned had to stay out of the sun and would be extremely sensitive to any kind of systemic infection. Exposure to the sun or to an infection like strep throat could trigger a lupus episode with potentially lethal results.

She had to be careful. She was warned to never take public transportation — especially airplanes — because they were breeding grounds for infections. Difficult since she was living in New York City.

Mom at around 40

When I was nine and she was 42, she developed strep. It activated her Lupus and she went into heart failure. More accurately, her doctor panicked when she got strep and gave her a dose of penicillin, even knowing she was allergic to it. The full body rash she developed was what actually sent her into heart failure. She was rushed to the hospital, where her doctor sat with her all night. He told her he was staying because he didn’t know if she would make it through the night. It was touch and go for a few days, but she pulled through, spirits intact.

In 1972, at the age of 56, she had her final bout with heart failure. Once she recovered, she enjoyed 24-years of relative health. Ironically, in her late 70’s, her heart was thoroughly checked out and all the scarring had disappeared, completely healed. So much for permanent damage. There was also no trace of Lupus. That was extremely unusual because Lupus is a chronic condition that doesn’t just go away by itself. There can be a temporary remission, but this was apparently long-term (permanent?) remission — which was (is) unheard of.

Mom in her 50’s

Mom continued to enjoy her Karmic reward of good health until the age of 81, when she got lung cancer. She fought it fiercely for four years, with great positive energy. Always fashionable, after losing her hair to chemo, she developed a unique style with wigs and hats. She died of a metastasized cancer at the age of 85 with her fighting spirit intact.

The medical community has come a considerable way in treatment, especially for heart related problems. Treatment would be much better today and what was or was not wrong with her heart could be diagnosed more accurately and treated with proper exercise rather than withdrawal. Yet even today, that’s a heavy weight of medical problems to deal with for any life.

THINGS WORTH FIGHTING FOR

I read a post about health care in which the entire comment column was made up of people fighting tooth and nail to get rid of health care. Most of the writers were obviously not well-educated people. That’s another way of my saying I don’t think I’ve ever seen such awful language pretending to be English. I’m not talking about typos. These are people who are, at best, barely literate.

And all of them, deeply and powerfully full of hate.

Photo: Garry Armstrong

They were frothing at the mouth with fury at the Democrat’s attempt to keep health care available to everyone. The very idea that this ought to be a battle about serving the health needs of the American people … and not about offering bigger tax cuts for people who already have more money than all the people I know — collectively.

They were furious. Enraged. Spewing violence and filth and hatred. To get rid of health care.

I did not get involved in this “conversation.” It was more an abscess than a conversation, a deep infection which will probably cause someone’s jaw to fall off.  Eventually. There would have been no point. These are not people who are listening to anyone but themselves. They have made up their minds — years ago I think — and do not wish to be confused with facts contrary to their preconceptions.

Aldrich Street as the sun sets

Imagine, for a moment, how much good these same people could do if they were fighting for something worth fighting for? If they were fighting tooth, nail, fang, and claw to keep the water clean. To stop air pollution. To keep developers from flattening every last tree and paving over anything alive and growing. Imagine, if you will, that all of these angry people could be persuaded to care about things that will matter not only to politicians, but to their grandchildren and the children who come after that.

Imagine the power we would have if we could stop hating and start caring.

Imagine.

DOING WHAT WE MUST: SURVIVING IF YOU CAN’T PAY FOR DRUGS – A GUEST POST

Case Management

When you are diagnosed with an illness for which there is no cure, but long time survival is possible, you quickly learn that the most important case manager you will ever have is yourself.  You need to learn everything you can to survive — legally and, if necessary, illegally.  You tend to drop your concern for law when your life is at stake, especially when you will “First, do no harm” (Primum non nocere), the oath of doctors and others helping people survive.

Support group members will urge you to not merely educate yourself about the disease, but to get a good case manager. After you understand all your treatment options and the decisions you will have to make, your case manager can help you navigate the maze of health care bureaucracy. This is important for everyone, whether or not they have a job or insurance. Anyone can be taken advantage of by the system.

Illustration: NBC News

Early after an HIV positive diagnosis, I was laid off from the job which provided my health insurance.  The fight to start COBRA coverage was immediate.  Many states have programs to help pay for continued health insurance under COBRA (Consolidated Omnibus Budget Reconciliation Act).  There may also have other drug assistance programs because the cost of medication, even with insurance, may be out of reach for those without jobs and even those with minimal jobs.

While state help was being lined up, my well-known insurance company was deciding whether to grant continued insurance.  Their basic argument was they were headquartered in another state and therefore were following other guidelines. The case manager got experienced lawyers familiar with this sort of trick to deal with the insurance company.  They finally offered COBRA and the state came through with payments.  This was the value of a knowledgeable case manager, but the process took time.

A Re-Purpose

The interval during the battle for coverage brought other concerns.  I knew I might be able to afford the multiple drugs for a month or two, but the extreme costs would quickly wipe me out.  That is when I learned about “other” assistance.  This kind of assistance is spoken of quietly by those who are desperate, but can be trusted.  It is the kind of help that takes place all over our region, and probably across the country too.

My case manager told me he might be able to help with some drugs, but not all.  When I came for an appointment one day, he told me to wait. He went to a pharmacy and came back with some of the medication I needed.  He took a black marker and carefully crossed out a name and gave it to me. He said it was mine now and not to say anything to anyone about this.  Ever. I left and kept quiet for years.  The agency he worked at is gone now, and I don’t know what happened to the case manager.

He had gone to a pharmacy that had secretly offered help.  When a patient did not pick up their HIV drugs for over a month, they did not put the item back in stock, but held it on the side for emergencies. If the item had been covered already by insurance, and the customer did not pick it up, they felt free to hand it to another. The drug company was paid and the insurance company was none the wiser.  This tactic is illegal, but many will run the risk to save lives.

Helping One Another

Not all managers are so resourceful or willing to run such risks.  Strictly speaking, it is against the law — dispensing drugs without a license.  There are individuals in support groups who are willing to assist with drugs, when no one else can.  For a while, there was an agency here that had acted as a go between to pass drugs from one patient to another.

In support groups, some would mention how they could bring unopened bottles of HIV medicine to the agency and they would keep it for those in need. Then if a member could prove they had a prescription for a particular drug the agency had on hand, they would give a month or two of the drug to the client.  That agency no longer does this or will even admit they did it for many years.  They could be shut down just like the agency referred to above.

Drugs are collected in many ways.  If someone who has gotten a three-month supply of medication, but then the drug was changed by his doctor, he would bring the unopened bottles to the agency to lock up in secret. If someone passed away, a mate might turn in unopened items to help someone else.

The fear of being caught helping to save lives has led many away from this type of help. Patients are left to do what they can for each other via contacts in support groups — or even “on the streets.”  Those fighting the disease can not imagine throwing out drugs that can help others.  Turning in drugs to be destroyed seems a bigger crime than “dispensing drugs without a license” for those who hold a prescription for a life-saving drug.

“Healing those who seek my help”

With the loss of agencies willing to help patients get drugs, legally or illegally, some doctors are willing to fill the void. There are those who collect back unopened drugs so others who can not afford them will benefit.  A doctor knows the prescription of a patient and will generally learn in private conversation who needs help.  If the drugs have already been bought and paid for, it seems a humane thing to do. In this country, this kind of help is unfortunately necessary.

The High Cost of Drugs

HIV drugs come in several classes and a patient is likely to take one or more from each of 3 or 4 groups per day.  Few drugs have generics and even those are expensive.  The retail cost in the United States for three or four of these drugs could run 4 to 5 thousand dollars per month.  Patients receiving various assistance programs are terrified of health care “reform.”  Out of necessity, we help each other.

When I was in Germany and discovered I had miscounted a medication. Of course I was panic-stricken.  I went to a pharmacy, who sent me to a local physician who spoke English.  I told her of my plight. When she was satisfied I had demonstrated I had such a prescription (I always bring proof if I travel), she wrote a new prescription. I went back to the pharmacy, prepared to charge to my credit card an outrageous amount due to my miscalculation. I knew my insurance card would not be honored overseas. The drug was reasonably priced, about one tenth what it costs retail here.

Aside from one doctor I know of, many who would otherwise be willing to help with drugs and health care services have been driven away –or at least underground.  Americans do not have the protections other countries around the world offer. In the absence of legal support, we do what we can to help everyone — not just with advice, but with life-saving drugs denied to many because they can’t afford them.


People without insurance die.
This is not a political opinion. It is a fact. 

NOTE: Since the author isn’t around to answer questions, comments are “off.”  I can’t answer questions because I don’t have any answers, sorry.

MAKE ME FEEL BETTER

I visited my favorite doctor last week. She is the only one of my original set of doctors I kept when I changed insurers. Despite her not being covered directly by my new insurance, she is irreplaceable. She “gets me.” To try to establish this kind of relationship with a new doctor? I’m not sure I’ve got that many years left. Or if there is another doctor like her.

I hadn’t seen her since her in while, so we had some catching up to do. We talked about me, her, life, getting older, and how things don’t feel like they did when we were young. Mostly, we discussed how important it is to feel better.

Anyone who has been sick for a long time knows what I mean when I say “I just want to feel better.”

There comes a moment in time when whatever is wrong with you has dragged on for what feels like an eternity. You can’t remember what it was like to feel good. You’ve done everything you are supposed to do and still, you feel like crap. Whether it’s cancer, recovering from surgery, anxiety, bipolarity, the pain of chronic illness — or any combination of the above plus whatever else I didn’t mention — one day, you just want to feel better.

You really don’t care how. Whatever it takes, whatever drugs, surgery, therapy, whatever. Please, make me feel better. I want a day without pain. Without anxiety, depression, nausea. I want to feel normal or at least something close to that. Whatever normal is. Because I am not sure I clearly remember “normal.”

As far as doctors are concerned, feeling better isn’t a medical thing. You can’t test for it. It doesn’t register on a chart. You can’t log it in the notes. There is no medical value to how you feel. If you can’t put it on a chart or turn it into a statistic, it’s unreal … and unimportant.

To me, it’s the only important thing.

Feeling lousy isn’t an illness, so feeling better isn’t a cure. The doctor keeps telling you you’re fine, except you don’t feel fine. You are tired, in pain, crabby, unable to sleep. Nauseated. Exasperated. Depressed. Fed up with everything.

Just three of my doctors — out of so many — believe feeling good is a legitimate medical goal. One is my primary care doctor, the next is my cardiologist and the last is my shrink. Her task is to help me feel better. “After all you’ve gone through,” she says, “that’s what I can do for you. I can help you feel more like you used to feel before all that horrible stuff happened.”

She understands. She gets it.

I’m going to keep her. The hell with insurance.