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.

TECHNOLOGY: FINDING THE BALANCE – Marilyn Armstrong

Fandango’s Provocative Question 6: Technology: Plus or Not?

As the owner and user of a lot of medical technology, I can say for 100% that without it, I’d be dead. Actually, I probably wouldn’t have made it out of childhood. I’d have died from ear infections, lung infections, throat and sinus and who knows what else. Or polio or any of the other diseases from which vaccinations saved us.

Technology at work

But then, there is plastic. Bags, bottles, straws. and all the pollution we pour into our oceans, air, and water. All the large mammals we’ve slaughtered until most of them are gone … or soon will be.

Fracking? Seriously? Driving a shaft deep into the heart of the earth? What could possibly go wrong with that?

Pacemaker

I’m not enough of a hypocrite to pretend that all advancement through technology is bad, but we need to find a balance. Some way in which humans can make healthy progress that doesn’t destroy the world we live in. If we destroy our planet, no amount of “technology” or “improvement” will make our lives better. If we ruin our own habitat, we will be like all the other vanishing species. Gone.

Sometimes, that’s what I think we ought to be. A vanishing species. If we can’t do good, we might as well be gone.

THE TIMELINE – Marilyn Armstrong

Finally, last night, I figured out that I’ve got between 10 and 12 years to live. It would be great if it were longer, but that’s pretty much what I’ve got and I want to live them well.

The math isn’t complicated. Hopefully, I’m finished with cancer. As much of my gastrointestinal tract has been removed as can be removed. My spine is completely calcified and most of the time, I can barely move.

The valves and Pacemaker they put into my heart are stamped and dated. They have time limits and the clock is ticking.

I’ve got two replaced heart valves: the mitral and the aortic.. Both are made from animal parts (valves?) and have an average life of 15-years. I’ve had them for nearly five years. They can last a little longer — sometimes as much as 17 years or as few as 12. Four down, let’s say ten to go?

Then there is the Pacemaker. The battery runs out in about 10 years, at which point they will want to open me up, remove the old pacemaker and replace it with a new one with a new battery. I think maybe since they have made major improvements in Pacemaker technology since they put this one in me four-years-ago, I could have this one replaced with one of the newer ones. Better batteries. And not metal.

That way, I wouldn’t have to wait until my eighties when I doubt I’ll want to go for heart surgery, minor or major.

My post surgery heart pillow; You grab it and hug it when you need to sneeze or cough, it is supposed to make you feel better. It doesn’t.

The valves are a larger problem. I know they are making progress designing replacement heart valves which last longer and work better, but whether they will be ready for me – in this lifetime – remains to be seen. As it stands right now, I have about 10 years. Maybe 12. After that, it’s time to say goodbye.

Unlike most people, there’s an actual clock ticking in my chest. Optimism will not make a difference. The timeline was created the day they did the surgery — five years this spring. The best I can do with it is pay forward on the Pacemaker (if they let me) and hope for the best with the valves.

Meanwhile, I am coming off a two-week remission of pain and misery using Prednisone.

I know Prednisone has a lot of side effects, especially for a woman my age with heart issues. Nonetheless, this two weeks using Prednisone has been the best two weeks I’ve had in years. I’ve been able to walk upstairs. Down is harder because it’s a balance issue, but I can walk upstairs. Slowly, but I can do it. I’ve been able to sleep in a comfortable position … which means I’ve been able to sleep.

I can get out of this chair without pushing myself up with my hands. I didn’t have to limp between the kitchen and the bathroom. In short, I have felt like I’m really alive. Now that I’m down to my last four tablets, I have been doing serious thinking about how I want to spend these next ten years.

I probably can’t take a full run of all-the-time Prednisone. That would more than likely wind up ending my life sooner rather than later … but maybe intermittent Prednisone? Like two weeks on, a month or six-weeks off? If I’ve got a limited lifespan, I would like to live it. Enjoy it.

I want to be able to move and not spend most of my life fending pain.

I’ve run out of options. I can’t take any NSAIDs. I am already taking narcotics light and I don’t see heavier doses as a direction I want to take. It doesn’t make the pain go away and it makes me stupid. What’s more, I’m allergic to most of them.

So, following the holidays, it’s time for a long, complicated talk with the doctor.

I can hope science will make a great leap forward that will change my future. Otherwise, I would like to make sure I don’t spend the remainder of my limited time battling pain. And you never know. They might find the miracle I need. It could happen.

Sensible ideas are welcome. I have choices to make and it’s time to make them.

ANOTHER DAY AT UMASS – Marilyn Armstrong

It’s another one of those lost days for us. This is Garry’s official 3-month audiological checkup. I’m expecting great things.  I’m charging my little camera because this time, I am remembering my own excellent advice:

NEVER GO ANYWHERE WITHOUT A CAMERA

my camera because even though it makes the bag more than a little bit heavy, you just never know. Pictures just happen.

I am due for at least one smiling photograph of Garry and his audiologist.

I’ll tell you all about it, but today, I’m going to be missing in action.

Sorry. I don’t think we get a normal week until sometime in January! And then, I’ve got a book competition to judge. Maybe in February?

THE FAMILY STRESS TEST – Marilyn Armstrong

It was Garry’s stress test, but somehow, it was mine too. He did all the running and he didn’t quit until the angle on the machine-made caused him to lose his balance. His heart peaked at 165/90 which is the reading I get when I’m a little bit nervous.

Exercise matters.

The word is that his heart is just fine. Excellent. He has a great heart, which i could have told them, but now they have all the readouts, so it’s official. It’s just that we are all getting older.

EKG setup

If I were going to start a new career today, I would go into medical technology. I have to admit — I love those machines. I love watching how neatly the valves in a heart open and close and send the oxygenated blood to be pumped to the rest of the body. I love how they have been able to notice that someone needs an immediate fix — off with you to catheterization or surgery, or intake to the cardiac ward.

Cardio-treadmill

I talked with the woman who was in charge of the machinery. She was also in charge of the doctor. She said she loved her job, that medical technology is a fabulous job. You get to do important, potentially life-saving work — but it’s all technology.

My kind of gig. Of course, that work didn’t even exist when I was figuring out what to do with my life. There are so many choices now. Maybe we’ll lose jobs to robots, but robots or robotic tools are going to change the world for all of us.

We came out of the hospital happy. They didn’t exactly tell Garry he was doing great, but they sort of did. I believe the expression was “nothing to worry about.”So Garry is tired after 20 minutes of running uphill. I’m tired from traipsing around the hospital. There are four huge buildings with the same address, so we had to go to two of them to find the right room. Most of the time, if you ask someone where something is, they don’t know. They know where they are going — or where they work — but where anything else might be? It’s a labyrinth.

We needed to stop at the grocery store on the way home because going shopping the day before Thanksgiving would be the ultimate stress test for us. Then he had to haul the groceries upstairs, then haul the trash up our bunny-slope driveway. It was quite a day.

At seventy-six, he is learning to hear and he has a great heart.

Happy Thanksgiving, Y’all.

EIGHT YEARS AND STILL IN REMISSION (YAY) – Marilyn Armstrong

Eight years ago today I had a bilateral mastectomy for cancer. I had malignant tumors in both breasts. Two different kinds of cancer. Which, I was told, is extremely rare. One in a million.

I’m always that one in a million.

The much better news was that both tumors were small and non-aggressive, as cancer goes. I also had the wits to find the best cancer doctor in Boston and the only plastic surgeon who was sure she could manage to create breasts for me. I’d had five (six?) previous abdominal surgeries, so there wasn’t any undamaged skin for her to work with … so she literally salvaged the skin from my breasts and reused it over the implants.

Recently – Photo: Garry Armstrong

I had four surgeons working on me at the same time because there were two breasts to be removed, followed by two “new ones” to be implanted. I was a total mess when I came out of surgery … but I had breasts. I didn’t have to go through the horrible stage where suddenly, you’re a woman with no breasts. I remember how much my mother hated losing first one, then the other breast. How they made her feel “unwomanly.”

It’s a surgery that changes you.

Mind you I had been told conclusively by at least three previous plastic surgeons that it was impossible. It couldn’t be done. That was when a friend (a doctor type friend) stepped in and introduced me to the good surgeons. The head honcho and her lead plastic surgeon. So I got them and their top assistants because they didn’t want to extend the surgery any longer than necessary and this way, they could work on both sides of me at the same time.

And that’s what they did.

That surgery changed me in a lot of ways I haven’t even begun to address despite the eight years that have passed. The heart surgery — a mere three years later — didn’t change me as much as losing both breasts.

It’s hard to explain how important breasts are to a woman. It doesn’t make any logical sense. Unless you are nursing — and I was way past the nursing phase of my life — they are secondary sexual characteristics. Yet from early on, one’s breasts define femininity. Size, shape, all of that stuff. The fake ones look more or less normal under clothing … but they don’t feel real.

Also, I have no nipples. I could have gotten pretend nipples, but it would have involved more surgery and more weeks of recovery. I realized fake nipples weren’t going to make me feel more female. They would feel as fake as the implanted breasts.

Make no mistake: I’m glad to have the fake breasts. I can look in the mirror and see a woman even though she has significant replacement parts.

I have to wonder about women who have breast surgery for “cosmetic” purposes. This is serious surgery. To do it voluntarily?

So, eight years later, I’m alive. My body changed enormously after that surgery. I went from being extremely thin to quite plump, probably because of the drugs they kept giving me to suppress production of estrogen. The drugs made me terribly sick and eventually, the oncologist suggested I stop taking them, that they were making me miserable and I had no quality of life left. I asked what percentage of difference not taking the drugs would make … and he said “less than 10%.”

I stopped taking them.

I still wonder if those drugs had something to do with how my heart disintegrated immediately thereafter. I can’t prove it, but still … those were some powerful drugs.

Climb every mountain – Photo: Ben Taylor

Meanwhile, it is eight years and there’s no sign of anything (new) wrong. It doesn’t mean I can’t get cancer somewhere else, mind you. It just takes one random floating cell to take root somewhere, but so far, so good.

Where cancer is concerned, that’s as good as any of us can ever say. You are never cured … just remitted. For now.

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?