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.

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.

ONE THING I DID NOT WANT TO BE

Old, by Rich Paschall

When you think of all the things you want to be when you grow up, “old” probably is not on the list.  You may think about being a doctor or nurse.  You may consider lawyer or politician.  Fireman or police officer may be on your list.  In fact, in your elementary school days you may have changed your mind many times. It is OK to dream about the future and fantasize about what you should do some day.

If superhero is on your list, you may have to give that one up rather quickly, unless you are Robert Downey, Jr.  He is playing Iron Man at the ripe old age of 50.  I guess that is a commentary on keeping yourself in good shape.  Of course, he is just play acting, like we do as kids, and he certainly has a stunt double.  Your own life does not come with a stunt double, sorry.

If we give it any thought at all while we are young, of course we want to live a long life.  Therefore, we do want to get old.  If accident or disease does not rob us of life too soon, then we will indeed get old.  It is all the things that go with it that I am not too pleased about.

Contemplating the years
Contemplating the years as the sun sets.

I did notice the changes in my grandparents as they got older.  I am certain that I threaded needles for both my grandmothers at some point in time.  I knew they could not see as well as when they were younger, but I never thought about that being me some day.  Yes, I can still thread a needle, but I probably have to hold it at just the right distance in order to do so.  In fact, I really need trifocals, but have settled for two pair of bifocals instead.  The bottom part is the same on each, but one pair is strictly for the computer.  The top part of the glasses are set to optimize view about where the monitor would be, a little more than arm’s distance away.

This is not fooling anyone, of course, not even myself.  People can see I switch glasses in order to see.  I should have gotten the same style glasses so it would be less obvious.  When I am on Skype, and can see myself back on the screen, I really do not like the look but I am stuck with them for a while.  At least glasses have gotten better and these are not as thick or heavy as ones I wore years ago.

72-LensCrafters-Auburn-Mall_22

As my grandfather got older, I noticed he sometimes used a cane to help him get up, or walk around.  When he was in his 80’s, he never left the house without the cane.  He just might have too much trouble walking while he was away. Sometimes when I walk past a window or mirror, I think for just a moment the reflection I see is my father or grandfather.  My stepmother once said that I should take it as a complement that people see me as my father, since he was so handsome, but I began to think they saw me as they saw him later in life.  That is, old.

When you see pictures of me, you generally will not see the cane.  I set it down for the shot.  Years ago my doctor sent me to a sports medicine guy for a foot problem of still undetermined origin.  Maybe I was playing sports in the park long after a time when I should have moved on.  Maybe I suffered some trauma that came back to get me.  Maybe it was related to some disease I contracted.  In any case, I had it operated on, which did not help.  Years later I had another operation.  That did not help either.  I had many procedures in between.  Was it just an issue of getting older?  We will never know for sure.

I have heard it said that the aches and pains we feel as we get older are not a natural part of life and we should not just accept them.  Perhaps some accept them when they could feel better, but I have never accepted them.  I have spent a good deal of time getting to know my doctor and all that goes on in his business.  Yes, I might as well interview him a little, he interviews me a lot.  Together we have looked for solutions to my various problems.

The Gabapentin for the foot nerve pain does not seem to eliminate the problem, even if it lessens it.  The Lidocaine patch may numb the pain, but I cut the patch down because a completely numb foot is not a good thing for walking and creates a dull pain, which actually is not much better than a sharp pain.

My doctor does not like my diet or my cholesterol.  He seems to cast a skeptical eye at my insistence that I watch the cholesterol rating on the food I buy.  That does not include restaurant food, however.  I don’t eat out often anyway.  Statins did not work.  They created muscle and joint pain I could not stand.  The non-statin anti-cholesterol pills are not as effective, but hold less side effects, apparently.  Other problems and medications have come and gone, I guess as the age related issues cropped up.  Parts wear out, you know.

Recently a high school class mate of mine wrote to say he had finally gotten in to a senior center he had applied for a while ago.  He had a variety of health issues in recent years and needed to get into such a community.  I wrote back that I could not imagine that any of us would be talking Senior Center, because it seemed like just a few years ago we were in high school together.

With any luck at all, old age will catch you some day.  You will probably feel it coming.

Related: Share If You Are Old Enough To Remember (humor)
To Not Grow Old Gracefully (Sunday Night Blog)

Me, A-Rod and Raw Onion

The Major League Baseball logo.

I have good days and bad. This wasn’t an especially good one. Not after my doctor called to mention in addition to the bad mitral valve, I have significant cardiomyopathy. Keep calm, stay hydrated and blog on. So here I am. Blogging on.

The good news? I’m unlikely to die of cancer. My heart will probably give out first.

The bad news? I think my career in professional baseball is over.

The A-Rod show has come at a perfect time for me, if not for MLB. It’s such high entertainment it has successfully distracted me from what would otherwise be a full descent into a puddle of self-pity.

Me and A-Fraud. Except that I never got the $275,000,000 contract or took all those performance enhancing drugs, now given this cool nickname of PEDs. You’d think if I’m going to have all the health issues, I could at least have had fun and gotten paid big bucks too. Like Alex baby.

A-Rod was on television — all over television — explaining how this has been the worst year of his life. Poor guy. He’s been humiliated by cheating and lying while getting paid staggering sums of money. He’s had health issues, but I’ll swap him any day of the week. Talk about clueless. He genuinely thinks we should feel sorry for him, not because of what he did, but because — take a deep breath — HE GOT CAUGHT! How embarrassing. What could be worse than having to publicly admit to wrong-doing when you’ve actually done wrong? But not to worry. Mr. Rodriguez is not admitting to anything by golly. He’s being picked on by Major League Baseball and the Yankees. He’s a victim, not a bad guy! Even if you don’t follow sports, this is one of those stories that has got to leave you with your jaw hanging.

Watching A-Rod be sincere on TV last night took my breath away. He used the same degree of sincerity as he did when he denied having taken steroids or even being tempted to take them. I loved that line. That is the definition of chutzpah and he’s not even Jewish. He said we should not judge him on his past. Let’s just move forward and trust him because he is a better man, a changed man, an honorable guy who loves baseball. And his paycheck. He’s had a hard time. (Bite lower lip, look victimized.)

That’s like a recidivist explaining to a jury that all his crimes are in the past. He promises not to hold up any more banks. Can’t we all forgive, forget and give him the fresh start he deserves?

Yeah, right. I have a bridge to sell.

While I’m working on recovering my sense of humor, I’m waiting for A-Rod’s next press conference. Garry and I were both surprised he didn’t produce a single tear. My husband feels that for $275,000,000 he should be able to cry on cue. I wondered how come he didn’t palm a piece of raw onion. A tear would have sealed the deal.

Personally, I have not found that crying helps much, but I don’t get press conferences. Just doctor appointments.