Myeloleukemia Patient Denied Treatment and Medication

I write this hoping to get media exposure and find help for my mother who has myeloleukemia. She needs treatment and medication, and I am unable to get it for her. I have written down the facts, skipping some of the details in order to shorten this saga. Few people will have the patience to read it all; imagine what it was like for us to live through it.

My mother had been diagnosed with myeloleukemia (or CML, Chronic Myeloid Leukemia) in 2000. She and my father lived overseas, in Moscow, Russia, where my mother was being treated by a hematologist and prescribed Glivec. After much turmoil which I will not describe here she was accepted into a patient assistance program through The Max Foundation, a charity organization that helps myeloleukemia patients. My mother had been receiving Glivec for free (minus some fees). Glivec is a very expensive medication that costs over $2,000 per pack, which is not even a one month supply. There was no way my mother could afford it with her $100 a month pension.

In June 2007, my father had a heart attack and passed away. My only option was to take my mother to live with me here in the United States; otherwise, she would be left all alone without any help; she has no other children, no brothers or sisters. I was able to obtain a 2 year visitor’s visa for mom (permanent residence was out of the question since the immigration service has its rules and does not care how difficult your situation may be). The 2 year visitor’s visa requires traveling out of the United States back to Russia every six months. My mother had talked to her doctor and managed to obtain a six month supply of Glivec instead of the usual three month supply. So she has lived with me in the US, and every six months she has to go back to Russia to prolong her visa and get more Glivec. The arrangement is inconvenient and expensive, but it works. At least my mother is with me, and I can take care of her.

It all started falling apart during our most recent trip to Russia when we were informed that the patient assistance program was changing, and my mother could no longer receive neither a six nor three month supply of Glivec. Beginning in 2008, the medication would be distributed only once a month.

Needless to say, my mother cannot afford traveling to Russia and back every month. I contacted The Max Foundation and asked whether it could be arranged for my mother to receive Glivec in America. I naively thought that since she was already enrolled in the patience assistance program, all we had to do was to transfer her file from the European branch to the American branch of The Max Foundation. I was wrong, of course. The patient assistance program in Europe and the patient assistance program in the US are seemingly on two different planets, I’ve learned, and the planets do not communicate. However, the representative of The Max Foundation had assured me that even though they could not help us to receive Glivec in America, my mother can be easily enrolled in the US patient assistance program. “Does she have any type of insurance?” they asked. I said she did not. “Good!” they replied, “In that case she is eligible.” The steps I had to take, according to The Max Foundation, were the following:

1) Contact Novartis, the company that manufactures Glivec, and ask for an application for the patient assistance program.

2) Find a hematologist / oncologist doctor in the US who would confirm my mother’s diagnosis of myeloleukemia. Fill out the application, have the doctor sign it, send it back to Novartis and get free Glivec.

This sounded simple enough. Back then, I believed everything I was told by the officials, so I got on the phone. My conversation with the Novartis representative was very short though. I told them I needed to get my mother enrolled in the patient assistance program; they asked for her name and social security number; I told them she did not have a SSN; they told me she was not eligible for the program.

Puzzled, I called The Max Foundation and told them that Novartis says my mother is not eligible because she does not have a social security number. “No, no, she does not have to have it,” I was assured. “It is not even included in the application. Just have them send the application to you, fill it out and send it back.”

Well, I still continued to believe what the officials said, so I called Novartis again. The conversation I had had with them before was repeated.

“I need to get my mother enrolled in the patience assistance program.”

“What is her name and social security number?”

“She does not have a social security number.”

“I am sorry, ma’am, but she is not eligible for the program.”

“Excuse me, but I was just told by a representative of The Max Foundation that she is.”

“No, ma’am, she isn’t.”

And that was the end of it. This was my first taste of how this detestable game is played: What one official says is not necessarily true, and even if it is, another official you are referred to does not care one bit about what somebody else has told you.

Back to The Max Foundation I went, telling them that NO, Novartis would not send me an application because my mother does not have a SSN. I was assured once again that this is not right, my mother is eligible, and the receptionist at Novartis does not know what they are doing. “But if they are so stubborn,” said the program officer of The Max Foundation, “have the doctor call them and ask for the application. Then if they ask for her SSN again, the doctor will just say, ‘I don’t know.’”

This sounded very fishy. For the life of me, I could not imagine a doctor who’d say “I don’t know” and continue to fight for the application. More than likely, the doctor would call me and ask for the darn SSN, and if I said that mom didn’t have it, I could just see them politely informing me that in that case Novartis says she is not eligible. However, I had no other option, so I decided to try and find an oncologist / hematologist who would confirm my mother’s diagnosis and – hopefully – obtain the application.

I called Morris Oncology in Morris, IL, explained the situation and asked what I needed to do to have my mother seen by a hematologist. The receptionist asked whether my mother had insurance; I said she did not, and explained that being uninsured was what made her eligible for the patient assistance program. The receptionist told me to go to the Will County Health Department.

I called the Will County Health Department, and they stated very clearly that they did not have a hematologist / oncologist and therefore could not help us. (Side note: we do not live in Will County, we live in LaSalle, and I called LaSalle County Health Department as well, with the same result.) So I was back to Square 1, calling Morris Oncology center. This time, the receptionist asked for my mother’s medical records from her regular doctor. Mom had seen a doctor here in the US on several occasions, in fact he had helped us to order blood tests that we forwarded to the hematologist in Moscow; I called his office and asked them to fax my mother’s file to Morris Oncology.

What followed is plain unbelievable. I called Morris Oncology and asked whether they had received my mother’s paperwork. They said they didn’t. I called the regular doctor’s office and asked whether they faxed the papers; they said they did. I asked them to please do it again, and they said they would, right now. However, when I called Morris Oncology, they still claimed they had not received anything. This game of “Have you sent it? – Yes – Have you received it? – No” continued to the point where I could no longer bring myself up to dial the doctor’s office number and ask them to fax the stuff yet again. I began to suspect that the process was being sabotaged, and figured it was time to pay a personal visit to Morris Oncology.

I hand-delivered the paperwork and told the receptionist I wanted an appointment scheduled for my mother – right now. I also had a letter with me that I wrote for the oncologist, telling her what we needed and stating in no uncertain terms that I would not give up until my mother had her life-supporting medication. Particularly, the letter said not to send me to Will County Health Department again because they did not have a hematologist / oncologist and could not help. I had little hope of the doctor actually reading my letter, but I still told the receptionist to give it to her.

I guess the receptionist saw that I was not to be messed with, at least not at that moment. She did not flat out refuse to schedule an appointment, but in order to schedule it, she said, I would need to get a referral from my mother’s regular doctor and her medical records from Moscow, Russia.

I swear she hoped I would not be able to get the latter done, and it was not easy. It had taken me weeks to obtain my mother’s medical records from Moscow, and when I did, they were of course in Russian, and of course nobody could translate them or knew who could, etc., etc. Had I not been a professional translator, this would be a dead end; but I happen to be one, so I got it done myself.

Once again, I hand-delivered the paperwork to Morris Oncology. The receptionist took it and said she would give it to the doctor and call me back. Side note: while I dealt with this office, promises of calling back had been made many times, and never fulfilled. So I was not surprised when the date set for “calling back” passed, and I had received no phone call. I had braced myself and dialed the number. It was a good thing that I braced myself, because I could not believe what I heard. “Yes, the doctor has looked at your papers, but she still suggests that you go to Will County Health Department…”

WHAT?? After all I had been through? After my letter that clearly said that I had contacted Will County Health Department and they cannot help??

I repeated this to the receptionist and told her to ask the doctor whether she wanted me to call my lawyer. The receptionist said she would talk to the doctor again and “call me back.” Needless to say, she never did.

I do not have a lawyer, unfortunately, and I cannot afford one. I looked for free legal help but could not find any. Besides, as much as I’d love to take these people to court, I am not sure that suing them would solve anything. Legal actions take time, and we do not have much time. My mother needs treatment and Glivec, so this is my first priority. I decided to let this go and try approaching a different hematologist.

I called the office of our regular doctor, the one who had helped us with blood tests, and asked whether they could refer me to another hematologist. They suggested I try the oncology office in Joliet. Ironically, it was the same group of doctors that I dealt with in Morris, but Joliet’s was a bigger office, so who knows, the clerk said, maybe things would be different there.

Things were different – at first. I called the Joliet oncology office, and the receptionist had scheduled an appointment right away. They asked about our insurance, and when I said that it was going to be self-pay, they didn’t have a problem with it – they just told us to bring $250. The appointment was two weeks away, but at least we were getting somewhere (we thought), so waiting a little more was fine. I got all the paperwork and the referral faxed to the Joliet office, and on the appointment day we were there.

We paid the $250, filled out more paperwork, and then a nurse had invited us in and did all the preparation like taking blood pressure, temperature, etc. The doctor came in shortly after that and began to study our papers and ask questions. She studied our papers for a bit too long, and seemed unable to figure something out. “Who referred you?.. Are these all the medical records you’ve got?..” and, finally, “What kind of insurance do you have?”

When I heard “Go to the Will County Health Department,” I almost laughed – hysterically.

“I WAS THERE AND THEY DO NOT HAVE A HEMATOLOGIST!!” I said.

“Yes, they do,” said the doctor.

“NO, THEY DON’T,” said I.

“Yes, they do,” said the doctor. “We treat people for them. They can refer you to me, and then I will treat you for free.”

I so wish I had recorded all these conversations. Today, I have no proof of who said what. If they choose to deny or “forget” it, it will be my word against theirs.

To make this long story a little shorter, the doctor returned our $250 and sent us away. She said the medical records and the recent blood test results that we had were not enough for her to confirm the diagnosis, so she would have to order more tests, including taking a bone marrow sample, and we would not be able to afford them as self-pay. Bone marrow test alone would cost $1,000. Darn right, we can’t afford it. So what do we do?? Do I just sit there and watch my mother die without treatment and medication?

I pointed it out once again that telling us to go to Will County was basically telling us to get lost. The doctor then told us to go to Cook County Hospital in Chicago, where she said my mother would be treated and given Glivec for free if we come up with a Chicago address to give them instead of our real address; otherwise, they would still send us the bill. That was the end of our appointment.

This took place on April 14, 2008. Today, on April 28, I am still reeling from the shock, unable to think straight and completely lost as to what to do now. We are not just back to Square 1 – we are on Square Zero. I do not know anyone in Chicago; besides, isn’t it illegal to give out a false address??

FYI, I have contacted both the Will County and LaSalle County Health Departments once again, just to check whether there is 1% of truth in the doctor’s statement that “they can refer you to me, and then I will treat you for free;” there isn’t. Both places maintain that they have no doctors and cannot do anything to help.

I have since called The American Cancer Society, The Leukemia and Lymphoma Society, and all kinds of other places. They are all nice and polite, but they cannot help. They give me a list of numbers to call, most of which I have called already, basically referring me to each other. I can’t pick up the phone and call anymore, and if I hear “Go to your local Health Department” again I’m going to beat my head against the wall. As to my mother, she cries every day, constantly apologizing for bringing so many problems into my life. Thanks a lot, doctors, organizations, and societies, you’ve been a great help to us.


As I said in the beginning of this article, I want to get media exposure. This is my last resort. WE NEED HELP. Not another number to call or another list of useless references but specific, practical help that will get my mother Glivec, the life-supporting medication she needs. If you have media connections or know someone who could do anything for us, please forward them this story. We will appreciate it more than you'll ever know.

Thank you.