Not a Poster Child

by Francine Falk-Allen

  A disease like poliomyelitis is not something that just happens and then it’s over, as in maladies where you get better and then life is about the same as it was before.

  There are, of course, a number of other diseases that also leave people with diminished function. They may be just as dramatic, or they may be more subtle, leaving the patient with, for instance, lifetime diminished breathing capacity, which means they’ll have to limit their activities and possibly be on a ventilator (like many polio survivors) later in life.

  There are breakthroughs being made in the field of paralysis rehabilitation. Electrical signals are being used to rekindle connections between the brain and damaged nerves in spinal cord injury patients, with remarkable success in a very few experimental cases. (National Institute of Biomedical Imaging and Bioengineering and the Christopher & Dana Reeve Foundation funded the research on one program.) Stem cell research may bring other innovations. New bracing techniques are getting people who would have otherwise been doomed to wheelchairs up and walking. These miraculous improvements cannot come quickly enough, though we can all be happy they are at least on the way.

  Many people who lived through the polio epidemic have since died. There are fewer and fewer of us who remember those days and the frightening specter it presented. The worry that one’s child would possibly become gravely ill and subsequently be paralyzed and/or crippled for life, or even die before they passed third grade, is something most Western people no longer have to face, thanks to vaccines. But there are purportedly around 500,000 to one million polio survivors in the United States, and millions more worldwide. (This is the second-largest disabled group in the US, with stroke survivors being the most prolific of those of us who qualify as “disabled.”) In terms of the entire world population, this is not a huge figure, but there was a time when nearly 1 percent of everyone in the United States had had polio, and if you lived in a large population center, it could be five or ten times that many (though not all with paralysis). Imagine if one in every ten to twenty people you knew had polio! In the short time frame between 1940 and 1952, more than 420,000 Americans were crippled by it, and many millions more contracted the virus. Most of them were children. 1952 was the worst year, with 58,000 diagnosed cases in the US. These are not just statistics; they are real people whose lives were damaged by this disease.

  Whooping cough, polio, smallpox, measles, mumps, chicken pox—all of these are “childhood” diseases, and most of them are life-threatening. When I was little, parents went out of their way to expose their kids to chicken pox and “get it over with.” Now we know that if you’ve had chicken pox, you have a 30 to 40 percent chance of getting shingles as an adult. From my experience, you don’t want that, and no one wants their six-year-old to face that condition forty to sixty years from now. Those are not low percentages. (The lifetime risk for breast cancer is 8 percent.) Shingles is maddeningly painful, and although some people find it just “uncomfortable,” it is often described as nearly intolerable. A woman friend likened it to childbirth, except childbirth does not go on every night for weeks. A man I know said he lay in bed whimpering and wishing he were dead when he had the malady all down his leg. A friend of mine whose dad had it refers to shingles as “ghastly.”

  Mumps is another now-preventable disease that is dangerous for young men to contract, causing potential damage to the testicles. It can also lead to deafness and brain inflammation in anyone. This disease is at a ten-year high, with outbreaks in forty-six states in the US, having jumped from 226 cases in 2012 to more than 4,000 in 2016, with more than two hundred people diagnosed in Texas alone in the first four months of 2017. It is thought that this is only partly because of the anti-vaxxer movement; immunity to the disease seems to be fading, so it is possible that a third dose of the MMR (measles, mumps, and rubella) vaccine may now be necessary rather than just the two lifetime doses medicine has prescribed up to this point.

  In Germany, the 2014–2015 emerging measles epidemic, with roughly thirty Berliners a day contracting the disease during some months, stoked a fire under those who have been hesitant to call for mandatory vaccinations. Now, journalists and parents there have started pushing for compulsory vaccinations. Measles, too, can cause brain and lung damage, and has seen a serious resurgence in the US, even though it was only eliminated as a threat here in 2000, quite recently. The first recent subsequent death from the disease occurred in Washington State in mid-2015. The patient had a compromised immune system, but infectious-disease specialists point to the movement among parents to abstain from vaccinating their children as the culprit in breaking down established “herd immunity,” which is what is being blamed in Europe as well.

  In 2016, there was a measles outbreak in Romania and Italy. As of this writing, the virus is now spreading across Europe. Diminutive Romania had 3,400 cases in fifteen months, resulting in seventeen deaths. This is partly due to scarcity of vaccines and cumbersome administration. In France, three medical appointments are necessary before inoculation actually happens.

  There’s no value in contracting any of these diseases. They are not like the common cold and exposure to minor bacteria, which help boost a young child’s immune system.

  All that stuff about vaccines causing autism is bunk. It’s been disproved. The one study that claimed in 1998 that MMR vaccines cause autism was proven fraudulent; the author’s medical license was even revoked. When researchers examined the eleven-year medical records of 96,000 children, the causes of autism were found to be either genetic or unidentified environmental factors. One portion of that study indicates that mothers who ran a fever in the first or second trimester of pregnancy had a 34 to 40 percent increase in incidence of autism. It seems a fever may cause inflammatory chemicals to cross the placenta. Pre-natal care, as ever, is the focus for fetal health.

  There was that one batch of US polio vaccine in the early 1950s that was not stored correctly (at Cutter Laboratories) and contained live virus that was not the prescribed weakened, highly effective vaccine. A couple of hundred people were infected by that vaccine, but in all my reading about polio in the last fifteen years—far more than the average American—I have read of only one elderly man who got polio from that bad batch of polio vaccine. I have met hundreds of polio survivors in the last five years, and of those, only three have said they contracted the virus from live vaccine. One of them believes he may have contracted the virus after a live polio virus inoculation in the US in the 1950s, perhaps the Cutter batch, although it is also possible he was exposed to polio before he was vaccinated or was given the live oral vaccine. The other two people were from India and said they got polio from live oral vaccine, which had still been in use there when they were vaccinated.

  In 2012, 144 countries still were administering the weakened live polio virus orally. This was discontinued before 2002 in the US; here, only killed, inoculated virus is used. As of 2017, the only remaining countries using live virus vaccines are Nigeria and Pakistan. (Live oral vaccine has historically been used primarily in impoverished countries, where syringes are not always available because they are expensive to obtain and require more training to administer.) The infection rate from oral vaccine (one child in one million) in these populations is much lower than the overall infection rate experienced from non-vaccination (in countries where less than 95 percent of people have been vaccinated).

  Whooping cough has reached near-epidemic proportions in some parts of the United States, including free-thinking California, because many parents have made the independent decision that their kids don’t need to be vaccinated and are more at risk if they are. This just is not true. If 95 percent of a population is vaccinated against a disease, that population rarely sees a case of that disease—so rarely that the disease is considered eradicated in that population. If the vaccination percentage is less than that, outbreaks are unpreventable. This happens with measles and is currently a problem with an enterovirus that has reared its ugly head in California, causing paraly
sis similar to polio symptoms. There is no vaccine for this virus yet.

  I had whooping cough when I was thirty-five and was afraid I might die. I’d had the vaccination for it as a child, but it requires boosters, which I had not known. I had to sleep sitting up and there were long periods of at least thirty seconds when I could not get a breath in or out. Fortunately, my yoga and Sufi practices had trained me to relax in order to breathe deeply, and this helped me have faith that my breath would come. I had the thought that if I were a small child, I would have panicked— which, of course, would have made it even more difficult to resume breathing. Small children can die from this disease, and suffocation is an awful way to go.

  Many people will never get one of these highly communicable diseases even if they don’t get vaccinated, especially since most people in Western countries have been vaccinated. But if they do get sick or carry a microbe, even without symptoms, they are putting hundreds of other children (and adults) at risk— especially since people may not know they are contagious until days after they contract a virus, if ever.

  With the help of the Bill and Melinda Gates Foundation and Rotary International, India was brought to the magic 95 percent vaccination rate in 2012. Bill Gates said in 2012 that he hopes polio will be eradicated worldwide by 2018, and that this will be a better economic deal for the world than continuing to treat the disease, which cost about $2 billion yearly in 2012—money that, by necessity, mostly comes from Western countries where the virus has already been defeated. In interviews, Melinda Gates has described vaccines as the most exciting of all health technology breakthroughs. She speaks of women she’s met in the developing world who have walked ten kilometers in the heat to stand in line to get their children inoculated for various preventable diseases. They have told her that they know that a vaccine often means the difference between life and death for their children.

  Polio was nearly eradicated. After 2011, when the last new case was reported in India, polio moved from Pakistan to Syria, where Pakistanis went to fight either against the Syrian rebels or Assad’s regime. News bulletins from the World Health Organization (WHO) in May 2014 said that new cases had also been reported in Cameroon, Ethiopia, Somalia, Iraq, Equatorial New Guinea—and Israel. You will note that Israel is not a “third world” country; it’s a Western nation in the Middle East. So, for a year we were back to nine countries (including Nigeria) where polio was not eradicated. The eradication victory is still tenuous when non-vaccinated people who have been in infected countries travel. The last countries where new cases have been identified in recent years were Nigeria in 2016, and Afghanistan, Pakistan, and Syria in 2017.

  If you have ever known anyone who traveled to any of these countries (I’ve been to two of them myself), you may have been exposed to the polio virus, but your vaccinations have protected you from infection. Many disease carriers have no symptoms, and most people who come down with active polio illness do not experience paralysis (though they may have early fatigue and weakness as they age). But why take a chance? This world has become small in terms of moving populations, with air travel today nearly as common as bus travel was in the 1950s and 60s. All it would take for polio to make a comeback in the US is for a number of exposed or infected visitors or unvaccinated US tourists coming from these countries to enter the US— and if this were to happen, the most likely targets of infection would be children. (Because polio tends to attack primarily the youngest children, a frequent synonym for poliomyelitis is infantile paralysis.) That’s how an epidemic starts.

  The WHO declared India polio-free in March 2014. Many young people there are already suffering from the late effects of polio, however. They do not have the extensive access to bracing and therapy that we have had in the US, though government funding has been increasingly addressing this issue. In Pakistan, the vaccination program was damaged, according to The New York Times and The Nation, by our CIA colluding with a Pakistani hepatitis vaccination doctor to obtain DNA information that led to the location and assassination of Osama bin Laden in 2011. When this happened, it was easy for the Taliban to start a rumor that this vaccination program was a method of sterilizing Muslim girls. As a result of that misconception, vaccine workers began being murdered, both in Pakistan and Nigeria. In 2014, Pakistan had fifty-nine cases of polio by mid-year, compared to only six cases in all of 2013. In January 2016, a suicide attack in southwestern Pakistan killed more than a dozen policemen gathered to escort health workers to and from a polio vaccination center, and wounded at least twenty-three civilians. I’m not sorry to see bin Laden gone, but it’s really unfortunate that this violence was a byproduct of the CIA’s methods.

  Though we might not experience an epidemic, I am not laissez-faire about exposing anyone to the poliomyelitis microbe or any other deadly, paralytic, or disfiguring bug. You may be relieved to know that Pakistan, Cameroon, and Syria have been ordered by the World Health Organization (as of May 2014) to vaccinate all travelers leaving those countries (assuming they have control over this, given the massive numbers of refugees fleeing Syria). The spread of Ebola to Dallas, Texas, and New York City from Liberia was a surprise in 2014. Hopefully there will soon be a vaccine for that.

  My opinion, and that of most well-informed medical people, is that it is foolish not to vaccinate children. It is socially irresponsible to expose kids and their families to diseases that are still all too common.

  If my story is not enough to convince your loved ones of the danger of these viruses, please at least have them watch the short PBS film made by Nobel Prize Media, Ed Gray Films, and Kikim Media, “The War Against Microbes,” which you can view at www.nobelprize.org. You’ll also get to meet me there briefly (though a friend says I look ten years younger in person). But the real reasons to watch it are to get a quick education in the insidiousness of viruses and bacteria, the value of vaccines, how much life has improved for millions of people because of vaccinations, and, lastly, the new protein microbes recently found to be infecting football players and others with repeated concussions. (Research on this new area is taking place at University of California San Francisco Medical Center.)

  Here’s some unsolicited, unabashed advice: get your shots (or whatever form they are currently using), and most especially, encourage your children and grandchildren to be inoculated against anything that has a vaccine. They can always spread the shots out; I agree that sometimes it seems that too many of them are given at one time to infants, although recent research indicates multiple vaccinations are not harmful. Give this book to your children or grandchildren if they do not “believe” in vaccinations. Ask them if, after reading at least the chapters on my physical difficulties, they think that the nearly nonexistent risk of vaccine side effects is a good bet against the proven risks to their kids (who can’t read up on this issue and make their own decisions) for these childhood diseases.

  In 2015, an Ottawa, Canada, mom left the anti-vaxxer movement after all seven of her children contracted whooping cough. Her comments, as published, were, “Right now my family is living with the consequences of misinformation and fear. But we can learn from this.”

  Resources for Readers

  My website and blog: www.FrancineFalk-Allen.com

  Facebook: @FrancineFalk-Allen, Author

  Polio and Other Disability Organizations

  There are many polio organizations all over the United States and in other countries. PHI is the most extensive and has lists of all polio organizations worldwide; PSA is in California (where I live); and PSNUK is another English-speaking organization, representing Europe, so I chose to stop with these three:

  • Post-Polio Health International (PHI), www.post-polio.org. This is the polio organization. They have a great website, including many articles written by polio survivors and polio doctors. There are stories about our polio experiences, great suggestions, articles on drugs, and many links to post-polio support groups, polio doctors, organizations nearest to you, and much more. They have a quarterly new
sletter to which you can subscribe. 4207 Lindell Blvd., #110, St. Louis, MO 63108-2930, info@post-polio.org.

  • Polio Survivors Association, http://polioassociation.org.

  12720 La Reina Avenue, Downey, CA 90242,

  info@polioassociation.org.

  • Polio Survivors Network of the United Kingdom, http://poliosurvivorsnetwork.org.uk. A good European site. Good suggestions for how to communicate with doctors so they understand that your current issues could be related to previously contracting polio and are not just “normal” symptoms of aging.

  Abilities.com is an organization that holds multiple Abilities Expos—large indoor fairs where a variety of innovations (bracing, auto adaptations, scooters) can be seen and investigated— each year. They are held in at least the following cities, if not more: San Jose, Los Angeles, New York, Houston. Information about these expos and myriad other resources can be found at www.abilities.com.

  About Disability, www.aboutdisability.com, is an organization started by Anthony Tusler, a lifelong disability advocate (and vibrant disabled person). A wealth of info is to be found here.

  American Physical Therapy Association, www.apta.org, is an online directory that can help you find a physical therapist (association member) near you. They also have a consumer website, www.moveforwardpt.com. (Recommended by Cleveland Clinic’s Arthritis Advisor newsletter.)

  Books on Post-Polio Management

  Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors, edited by Frederick Maynard, MD, and Joan Headley, MS. Essential reading on polio effects.

  Managing Post-Polio, by Lauro Halstead, MD. This is the authoritative book on post-polio, with explanations regarding what is happening to the polio patient thirty years or more after the initial onset, and how to make your life easier.