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 question, comments are “off” on this one. I really can’t answer questions because I don’t have any answers, sorry.

I’M SORRY … WHAT? – GARRY ARMSTRONG

This began as a lengthy comment to a blog posted by the imminent eminent wordsmith known as Evil Squirrel.  Squirrel’s blog For whom the Beltones” was a humorous look at the history of aids for the hearing-impaired and the advertising of the 1980s. Squirrel, this is truly evil. Maybe even blatantly racist if I can find an angle. I love it! You’re yelling to the choir with this one.


As you may know, I have needed hearing aids since I was a kid, back to the days when they were the small portable radios with a wire and earpiece. It was damned humiliating for a young guy.

As time went by, technology upgraded me to tiny, all in the ear aids. They were invisible on TV so it was great for me since I wore my aids all the time at work — except when I did live shots. Then, I had to replace one of my hearing aids with the IFB thingy which allowed everyone to talk directly into my head. Everyone could — and did — talk at the same time.

Sometimes there were two or three dozen people talking and shouting into my IFB as I calmly did my live reports. And smiled.

Often (simultaneously), the other hearing aid would pick up frequencies from nearby radio towers. I had a myriad TV people shouting into my IFB while Air Traffic Controllers yelled into my hearing aid. I calmly delivered the live reports. Then I went out for a few drinks.

Marilyn actually saw and heard a tape of one of these live shots, The station had accidentally recorded the stuff coming in through the IFB instead of the sound track for the story. She was awed. How could I function during all the clamor? Looking back, I’m awed too. I’m an awesome guy. That’s why they paid me the big bucks (not).

I interviewed Eddie Albert when he was filming “Yes, Giorgio” in Boston. Eddie was sunbathing along the Charles River. He smiled when he caught a glimpse of my tiny hearing aids. Pulled his out for comparison. A lot of “WHAT?” went down that day.

Fast forward to the present, I have the current behind the ears model hearing aids. My hearing is getting worse.

Huh? Can you hear me now??”

Postscript:

I didn’t always wear my hearing aids on a regular basis. Back then, it was worse (much) than being called “four eyes”. One night changed my whole attitude. My date had reached that critical point where you wonder if “it” will happen. The lady answered my query. I misheard her answer.

End of evening.

“CHEMISTRY” IN RELATIONSHIPS – BY ELLIN CURLEY

My mother was a psychologist with a private practice. She saw lots of relationships up close and personal. She always wondered how people seemed to be able to find others who satisfied their unconscious needs. The Ying to their Yang.

“How,” she would ask, “Does the sadist find the masochist?”

You need one of each for a relationship to work. No one wears signs advertising their dominatrix tendencies. How does the person who likes to wear diapers or fluffy animal suits, find like-minded people? Today the answer is online, but before the internet, people still managed to find one another. We are all like puzzle pieces. There are a few other pieces that fit neatly into our piece. But only a few. How do we find those needles in the haystack of humanity?

For example, everyone knows someone who always seems to end up with a similar ‘type’, usually one that is not good for them. There’s the woman who finds men who treat her badly, cheat on her, or abandon her. How does she know who is going to fit that pattern from an initial, often neutral social contact? When we first meet someone, we can’t really know them. So — what propels our choices?

My mother believed we all put out ‘vibes’ or signals on a subtle, primitive, even physiological level. Dogs can hear and smell things humans can’t. Mom believed that the unconscious ‘senses’ things of which the conscious brain is unaware. Maybe it’s pheromones. Maybe it’s micro facial movements.

I’m a perfect example of this unconscious level of communication. When I was young, I was attractive but very guarded about relationships with men. I was superficially outgoing, intelligent, and funny, but I was very closed off emotionally. Men sensed that and stayed away. I could go to dances, looking great, and never get asked to dance. It was as if I’d created an invisible protective shield around myself. I ended up marrying an abusive, controlling, manic-depressive. I stayed with him for 25 years.

Decades, and years of therapy later, I started dating again, after my divorce. I had conquered my inner demons and was open to a healthy relationship. I had no trouble finding men who were interested in me this time around, even in my late 40’s. I ended up in a wonderful marriage to a kind, caring, delightful man.

Something had happened to me on a deep, emotional, and unconscious level. Yet it made a palpable difference in my real world relationship experiences. How was that change so effectively communicated to the outside world? My outward personality hadn’t changed much. To meet me, you weren’t hit in the head with my inner transformation. My friends still recognized me as the same person I had always been – at least on the surface.

I’m not a psychologist and I don’t have any answers. I find it fascinating that who we are on a psychological level manages to get projected to other people. Haven’t you met someone and immediately had a strong reaction to them, either positive or negative? I met a woman at a book club meeting. I knew we were going to be friends. Years later we are still best friends, yet we hardly talked at that first meeting.

We call this ‘chemistry’. We say we are ‘drawn’ to someone. I don’t know how to explain it, but three cheers for whatever it is!

GIBBS’ EARS

One of the side effects of a day at the spa was the discovery that Gibbs ears are not looking good. Bring on the blue stuff! If you don’t know what blue stuff is, allow me to introduce you to the world’s best cure for whatever is bothering the dogs’ ears (other than mites).


BLUE POWER EAR TREATMENT

16 oz. Isopropyl Alcohol (or 16 oz. Witch Hazel if ears are very inflamed or sore)
4 Tablespoons Boric Acid Powder
16 Drops Gentian Violet Solution 1%
Mix together in plastic bottle and shake well.

You will need to shake the solution every time you use it. Purchase a “Clairol” type plastic bottle to dispense solution to affected ears. These bottles can be found at beauty supply shops.

I make half this amount, then I warm it to body temperature in the microwave.

NOTE: If you don’t own one, buy a dropper. The gentian violet does not come with its own.


TREATMENT

If you aren’t absolutely sure what you are dealing with, a trip to the vet is your best start.

Warm the solution and shake the bottle each time before using. Flood the ear with solution (gently squirt bottle). Massage gently to the count of 60, wipe with a tissue. On first treatment, flood the ear twice, wipe with a tissue, and leave alone without massage.

The dog will shake out the excess, which can be wiped with a tissue.

NOTE: Gentian Violet STAINS fabric and FUR! Be careful. The stains are impossible to remove.


Many people ask why this miracle preparation isn’t commercially available. The answer is, it is available. You can buy it on Amazon for $20 per 8 ounce bottle. Or buy the ingredients from your pharmacy, which is a lot cheaper. You used to be able to buy gentian violet in the pharmacy any time. These days, you have to order it and it cost more than it used to. It’s still much less expensive than buying the solution in a bottle. I’m betting you can also get it from your veterinarian. Vets have come a long way in dealing with using non-antibiotic ingredients.

Gibbs

For a long time, it wasn’t available anywhere unless you made it yourself. That never made sense to me. I had hounds with long, floppy ears. Infected ears are extremely common in long-eared dogs. We were back and forth to the vet over and over until someone in my hound group introduced us to the blue stuff.

It worked.

It still works.

Gibbs is a most unhappy dog. It’s not that this stuff hurts. It doesn’t. It’s just the Gibbs has strong feelings about being treated. For anything. Ever. For a relatively small dog, he is surprisingly strong and it is a serious job to hold him still. As far as he is concerned, treating his ears is an insult. He isn’t even speaking to us until he is sure a treat is in the works. He softens in the face of treats — what a surprise.

Gibbs’ thinking about forgiving us. Until tomorrow.

How do you explain medical treatment to a dog? Or any animal? Or for that matter, a baby? I always tell them this is for their own good. Infected ears are definitely worse than any amount of blue stuff, but they don’t listen. Gibbs is seriously upset with us. The worst part of this is we are going to have to do it again tomorrow.

I hope he is still talking to us when his ears are cured.

DOING WHAT YOU LOVE, LOVING WHAT YOU DO – BY ELLIN CURLEY

My mother was a psychologist and my father was a psychoanalyst. They both practiced as therapists. It seemed like the greatest profession and I grew up wanting to be a therapist too. You get to help people but you can be your own boss and set your own schedule. I always thought I would go to medical school, like my Dad, and become a psychiatrist or psychoanalyst.

Unfortunately, it turned out that I sucked at science. After my first year in college, I realized that I would never get good enough grades in the sciences to get into medical school. So I followed my interests and became an American Studies major, with a minor in history. Toward the end of my college career, I announced that I would become a therapist by going to social work or psychology grad school.

My father went ballistic. He was actually famous in his profession. He was devastated at the thought that his daughter would not go to medical school. ‘Just’ being a therapist, without a medical degree, was unthinkable for any daughter of his. I would have been an embarrassment.

Like a young, insecure idiot, I bowed to his wishes and gave up my dream. I realized I could go to law school if I just took the LSAT exam. So that’s what I did. I basically chose a career based on where I could go to grad school — with the least amount of hassle. I was interested in the law, but not excited. I had no idea what it meant to be a practicing lawyer, day-to-day.

I made it through law school, still not really motivated to practice law. It turned out that the only kind of law I was really interested in, found intellectually challenging, was litigation, or trial practice. But litigators had to put in crazy, unpredictable hours and my husband was already doing that. I wanted children and didn’t think I could handle a demanding career, a demanding husband, running our lives and bringing up kids. I don’t thrive on stress and hyperactivity – they sap me and overwhelm me. I ended up being overwhelmed anyway, at home, with a bi-polar husband and one child with psychological and learning issues.

So I opted for a small, general practice law firm in New York City. I did contracts, trusts and estates, some leases, etc. I was bored out of my mind. Lots of paperwork and endless bureaucracy to negotiate. Not stimulating or gratifying in any way. I couldn’t wait to get pregnant so I could quit and become a stay at home Mom. Being a Mother was the one thing I was really excited about.

It turns out that the day my son was born, two months prematurely, I found my ideal career. I loved being a Mom and managing a home for my family. I worked hard, with no weekends off and few vacations. I was never bored. I always felt challenged by whatever phase my kids were going through. I was happy and satisfied with my life style.

I never looked back or regretted my decision to leave the law for motherhood. The decision I regret was appeasing my father and not pursuing the career I really wanted, in whatever way I wanted. Had I found a career I loved, my life would have played out differently. I could have worked part-time as a psychologist while my kids grew up, like my Mom did. (At that time, part-time work or job sharing was almost non-existent in law firms). I would also have had a career to go back to when my kids left home. It would have been nice to have a job I loved to fill the empty nest years, in my 50’s and 60’s.

What is depressing to me now is that I gave up the chance to fulfill my dreams of being a therapist. And I gave it all up to assuage my father’s ego. I wish I could go back now and tell my 21-year-old self to stand up to my Dad. To just go for the life I wanted. What makes it worse is that my Dad and I had a very limited and strained relationship. He was not really involved in my life. Except to step in and put the kibosh on my career choice.

I loved my job as a home maker and Mom. But I could also have loved my job as a therapist. And, I would have never felt I missed out on a big part of life.

THE MAZE OF AGE

Growing up and getting old are not the same thing. You’ve probably noticed.

We went to the eye doctor yesterday. Eye exams for both of us and amazingly, neither of us needed new glasses. What a relief! I did need new computer glasses and Lenscrafters was having a fabulous sale — a complete pair in an hour for $99. The ones I’ve been wearing have gotten scratched, which after three years was probably inevitable.

While I was talking about eyes and glasses, the eye doctor wanted to know what Garry does to stay so young. He was very impressed. “Does he have a workout routine or something,” he asked.

“He was a Marine,” I said, “And he has always taken good care of his body. Better these days now that he doesn’t drink or eat junk food.”

“Well, I get a lot of people his age in here and they are old. He looks great.”

Garry does look great, even if he doesn’t always feel as good as he looks. This weather is hard on his arthritis, as it is on mine. Garry told me he doesn’t feel old. Yes, of course, he complains about aches and pains, but he doesn’t “feel old.” Whatever that means. I said neither do I. My body has its own agenda and I have to deal with it, but it’s not something I’d choose. The body is separate and it has issues, but my mind isn’t old. A little forgetful, but otherwise, pretty good. Mostly.

What does “old” feel like? Not whether or not you get Social Security or have grand children. How does it feel? How do you know you’ve made it? I was first told it would be when I had children, but my son is heading towards his own lack of maturity. Does this stuff run in families?

Thus we got to talking about the people we know. Who is “old.” Who isn’t.

In our age group, we know some old people, including a few who seem to have been caught in a generational time warp. They aren’t old exactly, but they aren’t living in today’s world, either and no it isn’t dementia. They just loved the sixties so much, they never emerged. I sometimes think I should have done the same, but I digress.

Other people we know have always been old. They were born with an “old” gene. And the rest of us don’t feel like we’ve made it into adulthood. Are “adulthood” and “adultery” variations on one bizarre word?

Personally, I was sure by the time my granddaughter was breaching 21 and Garry and I were getting Social Security, this was as mature as we will get — and I suspect I was right. Apparently feeling grown up is not a “calendar” factor. More like a maze in which you wander twisting hallways. Some roam down “old” halls, others not.

It is interesting, this “getting old” thing. Your body goes its own way. Your mind travels differently. Even when my physical self feels like road kill, my brain is ready to go. That my body won’t do what I want presents me with a conflict I cannot resolve. I’m sure this is something every one of every age deals with if they are disabled. You deal with it. Learn to recognize what you can and cannot do, but you never get used to it.

I have rebellious days, even now, though fewer as time goes on. Is that maturity? Thank God for computers! At least here, I can fly.

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.