I am about to become a citizen of the United States. I was born and raised in communist East Germany where travel was possible only to the countries of the Eastern Bloc. Even some of those countries were off limits for East Germans. When the wall came down, I was 18 years old. Up until then, I couldn’t visit, or be in touch with, my relatives in West Germany: my uncle, my cousins, my second cousins, my cousins once removed, my great aunts and uncles. I didn’t expect to ever be able to. Some people tried to climb over the wall, make their way through Check Point Charlie in a secret, custom-made compartment of a car, swim across border rivers, sneak across the Baltic Sea via a small inflatable boat or an air mattress during a foggy night or fly across the border in a hot air balloon. Few actually made it. Many were shot by border guards or automatic machine guns, killed by mines or drowned during their attempts. Others were incarcerated for trying to escape or merely planning to try. I was enough of a realist to be resigned to the fact that East Germany was going to be it for me, for the rest of my life.
This all changed in 1989 when the iron curtain was lifted due to the bravery of some East Germans while most of East Germany watched in amazement, as did the rest of the world. The footage of those events still gives me goose bumps and tears. Over night, I had gotten permission to be an individual instead of a robot programmed to comply in order to avoid being decommissioned. I didn’t have to censor myself anymore, I didn’t have to regurgitate communist propaganda, I didn’t have to worry that my classmates would turn me in for watching West German TV, I didn’t have to let teachers emotionally and socially abuse me for having gone to church once when I was in second grade, I didn’t have to worry about what was recorded in my Stasi (the ever-present East German secret service) file based on people in my life who were “unofficial informants” (about 200,000 people in a country with a population of 18 million people) and whether it would keep me from getting into medical school. (The thought of having wanted to be a medical doctor for most of my childhood and adolescent years is more ironic than I want to get into here. My fellow ME patients will understand why.) I didn’t grasp this new-found freedom right away, but I slowly started to realize that it’s ok to stand up for myself and for others, to speak my mind, to do what is right instead of what is safe. I started to trust that, in the democracy of first a reformed East Germany and later a united Germany, I would not have to jeopardize my civil rights for my values anymore. And I was free to live where I chose.
Moving to the US more than 13 years ago was a dream come true because for more than half of my life at that point, I thought I could never even be a tourist here, let alone a resident. I felt emotionally freer here than I had in the rigid Germany. And I was comforted by the fact that the US had a strong civil-rights tradition. Certainly, the thought that I might be separated from my family because of morally wrong actions by the US government would have seemed absurd had it occurred to me at the time. Being on the brink of becoming a US citizen is another goose-bumps milestone in my life. That is not to say that I am not mortified that, in this country, a not insignificant number of people is in favor of—actually they are cheering for—letting uninsured people die of a treatable medical condition. Or that every time I turn on the news, I don’t worry about hearing of another mass shooting. Not all is good in the Land of the Free, but for me personally, the pros have far outweighed the cons over the years. I feel very grateful for the opportunities I’ve been given here.
A lot of these opportunities vanished when I got sick with ME 6.5 years ago. Dr. Friedman recently described having ME as “having the worst flu of your life for the rest of your life.” It’s actually worse than that because, in addition to the flu-like symptoms, patients experience many serious symptoms that one does not get with the flu. Dr. Kogelnik said a couple of months ago that he has not seen a sicker patient population than ME patients, except in the ICU. If you are physician reading this who is unfamiliar with this disease (basically every physician in this country, except for maybe two or three dozen or so doctors) and if you are thinking that Dr. Friedman or Dr. Kogelnik were exaggerating because you still believe what they taught you in medical school, let me tell you that you have no clue. None! Remember when the medical “wisdom” not that long ago was that Helicobacter pylori doesn’t cause stomach ulcers? Given how much the research differs from medical-school teachings on ME, it is your responsibility to educate yourself at least enough to be able to recognize this disease, stop harming patients by prescribing the wrong treatment and refer them to those few doctors who do know this disease very well. Remember the oath you took? Did you mean it or was this just a formality on your path to adding those coveted two letters after your last name that give you super powers—in your mind at least? In case you are wondering, the level of cynicism I feel for many doctors is directly proportionate to the amount of abuse I and my fellow patients have taken from physicians over the years.
I am completely unable to work and for the most part, I am unable to travel, socialize, exercise, do my fair share of housework or play with my daughter, Aimee. I have talked about my limitations—and what happens if I try to ignore them—in more detail in the past. They are worse now than they were then. But speaking of Aimee, she is a delightful, beautiful and smart little 2 years old girl. My husband, Ed, and I endured three grueling IVFs and beat 2% odds to have her and yet, I only see her in person for a weekend about every 3 weeks. Making the 4-hour trip more often sets me back too much. We video chat every night and it has helped to keep our connection, but those “Mami, come home!” moments are heart-wrenching.
Aimee is the perfect blend of Ed and me, which is a relief after conceiving in a lab. She has my eyes and my hair. Her nose is a combination of Ed’s and my nose. Her mouth seems to be still deciding whom it takes after. Aimee has Ed’s long legs and my strong will. She jabbers all the time. That one is mostly Ed. She loves shoes. I’ve got to believe that that one is me. Aimee loves her gymnastics classes, which are basically a safe place to climb and jump. She enjoys kicking and throwing the ball and pushing around her “Pueppchen” (little doll) in her baby stroller. But her favorite thing to do is probably meeting up with her many friends at the park. She is more comfortable with boys than girls. She got this neither from Ed nor from me. She has a hard time eating solid food for some reason. She definitely didn’t get that from her parents. She has allergies to something. To what we are not totally sure of, but it doesn’t seem to slow her down too much. She loves books and has not caught on yet to the fact that the man with the yellow hat seems a little creepy. She focuses mostly on George. She can say things like, “Beethoven” (don’t ask!) or “dinosaur” but she can’t pronounce our nanny’s name, Monika. So, for now, Monika is “market” and luckily, Monika is not offended. Imagine the desperation of a mother to decide to miss out on pretty much all of this with her only child.
The reason for my physical separation from Aimee and Ed is that I moved to Incline Village, NV, in order to receive the immune-modulating drug Ampligen. For most patients, receiving Ampligen is a long-term commitment. Once patients get off the drug, they typically relapse. Not always and not right away, but eventually. It also takes months, in many cases, to start seeing any results. But better to spend those months working on a chance of a life than to just watch this progressive disease eat up one’s body more and more without doing anything. After nearly 5 months, I feel like I am starting to respond to Ampligen. Had I begun Ampligen therapy earlier in my illness, I would most likely have responded much sooner and potentially even have been cured. The chances of Ampligen being effective diminish with each year of being sick. But none of the many doctors I had seen over the years even mentioned Ampligen, most likely because they never heard of it. So, I didn’t know the drug existed until I started going to the Bay Area Support Group meetings last year.
Ampligen is administered via infusion twice a week. It is available in only 5 places in the country. Besides Incline Village, those places are New York City, Salt Lake City, Miami and North Carolina. The reason for the limited availability is that it is an experimental drug, meaning that it is not FDA approved. Since the approval process to become the site for an experimental drug is very involved, it is not something many doctors have the time or patience for. Without FDA approval, insurance companies usually don’t pay for the drug. Because of the drug’s high price and the limited availability, very few patients are in a position to receive it. Most can’t afford paying for the drug and infusion costs alone: depending on the dose, between about $15,000 and $30,000 per year. Who can afford that plus the moving costs and having their partner give up their job to move with them or, alternatively, pay for the costs of a second home at an Ampligen location? And even if one can afford a second home, how many people can tolerate leaving their family behind? The answer is: There are less than 50 people currently on Ampligen. This is despite the fact that it has been proven to be extremely effective in a sub-group of ME patients, a patient population that has no other approved treatment because the government spends more money on hay fever than on this debilitating neuro-immune disease that affects at least a million people in this country alone. Ampligen has very few side effects and is amazingly safe. I had some negative reactions in the beginning, but after adjusting the dose and the infusion rate, I am basically side-effect free. Since Ampligen first was used in ME patients in 1988, many drugs with much more serious side effects than Ampligen have been approved for conditions less serious than ME.
So, why is Ampligen not FDA approved 24 years later? Because the FDA, and other government agencies, such as the CDC and the NIH, have, over nearly three decades, taken the unfounded and preposterous position that ME is a non-serious, psychological illness, which exists merely in patients’ heads and which only requires exercise and psychotherapy to be cured. Of course, this has been disproven thousands of times. ME patients are often sicker than MS or AIDS patients. Many biomarkers prove that. Exercise—if prescribed in the same way as it is for people without ME—makes us sicker, often significantly, sometimes permanently. Exercise for us is doing laundry, emptying the dishwasher, going grocery shopping. Many of us are at least at one point or another, if not at all times, unable to do those and many other things without a symptom flare-up. Filling up our fridge or having clean sheets might result in a stint in bed for days. For some people, those activities are impossible to do altogether. Imagine what happened if we tried to go to the gym! And talking to a therapist doesn’t help us more than it does other chronically ill patients. But I guess government egos and the fear of the embarrassment that would come with admitting that a large and very sick patient group has been neglected and thrown to the wolves by government agencies (and as a result, by the medical and scientific establishment) for that long is a powerful motivator to keep the status quo. Plus, the health and disability insurance lobby is a very powerful one. Insurance companies stand to lose billions if ME were given the attention and classification by the government it deserves. Never mind that not doing so is tantamount to aiding and abetting the crippling of lives of millions and their families. Keeping children from having their parents raise them and keeping parents from seeing their children grow up is just one manifestation of this crime.
Others have described living with ME as dying a slow and agonizing death. Some people don’t have the strength to hang on any longer because of the relentless nature of the many and severe symptoms, which make getting through the day feel like a marathon for patients who can hardly walk a block. Add to that the ridicule, abuse and stigma, how does one go on without any hope for a treatment during one’s lifetime? Nobody is keeping track of the number of suicides in this disease. How convenient! But we do know that it’s high because we all have lost friends to suicide. Not only is the government not providing anywhere near adequate amounts of research money for ME (MS research for, e.g., gets funded about 30 times more than ME research despite the fact that there are a lot less MS than ME patients and they are often more functional than ME patients), it is also not approving the one drug that we know works for patients with a certain biomarker profile. Don’t kid yourself, FDA. Making the very deliberate and unsupportable decision not to approve Ampligen kills people! Quite directly by withholding an effective drug and indirectly by quashing the hope.
When Aimee gets silly, she sometimes chants, “Mami, Mami, Mami, Mami, Mami …” Like she is rooting for me. For the last few months, I mostly heard this via my laptop. So, when will I be able to be a meaningful part of my daughter’s life again? That depends solely on the FDA finally doing the right thing by approving Ampligen. I am not holding my breath. I don’t say this lightly, but this very much feels like East Germany all over again. This time, I am not separated from my family by a wall, but by an irresponsible, arrogant and cruel government agency.