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.
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.
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.