Twin Voices: A Memoir of Polio, the Forgotten Killer

Contents

Acknowledgments

Foreword

Preface

Introduction

PART ONE:

TOUGH TIMES

Janice—A Twin on a Mission

Janice—So, Here We Are

Frankie—My Short Life on Earth

Frank—Our Life before Polio

Frankie—My Last Days on Earth

Dorothy—Our Polio Nightmare

Alice (Jaros) Turek, MD, MPH—Polio the Disease

Frankie—Heaven

Frank—How to Tell Janice?

Dorothy—Decisions

Janice—Frankie’s Wake

Mrs. Louise DeMartino—United We Stand

Janice—Funeral, Burial, a Headache

Frank and Dorothy—Not Again

Janice—City Hospital, Therapy

Mrs. Russell (Betty) Wightman—March of Dimes, 1953 Memories

Dave—Surgical Care

Brett Sagenkahn and Alan and Gary DeMartino—What Kids Remember

Frank and Dorothy—Aftermath

PART TWO:

PROGRESS

Mrs. Betty Anne Read and Mrs. Jeanne LaVoy—Mothers Unite

Alice (Jaros) Turek,

MD, MPH—The Salk Vaccine

Mrs. Louise DeMartino—Parental Request to Participate

1,829,916 Polio Pioneers—The 1954 Salk Vaccine Trials

Alice (Jaros) Turek, MD,

MPH—Salk Results,

the Cutter Situation

Janice—Soul-Searching

Bonne (Paltz) Hall and Bob Paltz—Vaccination in the Late 1950s

Mrs. Pat (Marshall) Coolican—March of Dimes, Changes

Janice—Progress, Struggles, Reflection

Alice (Jaros) Turek, MD, MPH—The Sabin Vaccine

Janice—Life Direction

Mary Jane (Reid) Maidment—Anniversaries

Janice—Polio’s Surprise, Wednesday’s Child

Janice—Choices, New Adventures

Dave—Medical Care Update

Esther and Chet Sagenkahn—Let Me Thank You

Dave—Post-Polio Syndrome

Janice—Polio, Part II

Alice (Jaros) Turek, MD,

MPH—Changes, Eradication

Update

Janice—Back to City Hospital

Frankie—Heaven Update

Postscript

Appendix

About the Author

Notes

Consulted Works

Photo Credits

Acknowledgments

Without the love and support of my husband, Dave, and son Kevin, the story of a little boy named Frankie and his twin sister, Janice, would have remained half locked inside my heart. Thank you for your love, for believing in this story, and for respecting my need to bring meaning in a broader context to my life‘s journey. I love you both.

To the members of my family who have given voice to this story: Betty Coolican Wightman, Pat Marshall Coolican, Bonne Paltz Hall, and Bob Paltz, as well as to my college roommate Mary Jane Reid Maidment. I love you all. To Uncle Tommy, thanks for the newspaper photo ops that you and Buddy always finagled when Frankie and I were little kids. I love you.

It has been gratifying to meet or reconnect with the following individuals whose lives were impacted by our polio story: Dr. Alice Jaros Turek (retired pediatrician and public health official), Louise DeMartino, Alan DeMartino, Gary DeMartino, Brett Sagenkahn, Esther and Chet Sagenkahn, the „voice of Betty Anne Read supplied by her daughter Carol Read, the „voice of Jeanne LaVoy supplied by her daughters Pat LaVoy Harris and Marty LaVoy Hahn and her daughter-in-law Jean LaVoy, and Mr. and Mrs. John Kalamarides, son and daughter-in-law of Dr. John Kalamarides.

I will be forever indebted to members of the SUNY Upstate Medical University staff, including: Dean Hugh Bonner, Eric and Diane Luft, Annette Sharkey, Bob Fluck, Deborah Rexine, Carol Plumley, Sharon Kitchie, and Renee Gearhart Levy. Your role brought our polio story full circle.

The following individuals added invaluable historical context to this work: Christine Scott of the March of Dimes, Joan Headley of Post-Polio Health International, Dudley Ericson, Carol Anthony, and David Mazur of Rotary International, Molly Elliott and Kellie Caimano of the Syracuse Post Standard, Kathy Hadley at the Onondaga County Medical Society, Sarah Kozma at the Onondaga County Historical Association, the Syracuse Office of Vital Statistics, the National Oceanic and Atmospheric Administration, the University of Pittsburgh, Sona Bari and Oliver Rosenbauer of the World Health Organization, Benoit Rungeard, Virginia Steckel, and Scott Eden of Sanofi Pasteur,

Dr. Alice Kendrick and Linda Schellinger of the Jamesville DeWitt Central School District, Maxine F. Kidder, RN, PNP, and Jann Hartman. Technical and editorial support was provided by David Hall, Mary Anne Sacco, Kimberly Petsch, and L. Edward Purcell.

To Michele Moore Ridge, my college friend and grad school roommate, thanks for the copy of the Rotarían. I’m sure Frankie knew that the article on Rotary’s PolioPlus program would help me see the importance of telling our story, a story you always encouraged me to tell.

My special friends Mary Jane Reid Maidment, Cheryl LaFex-Maestri, Karen Gates Konefal, and Lenore Gripp Highet have provided me with continual feedback and much-needed encouragement. Only true friends would have found it pleasurable to read a new draft of this book every few weeks. I’m certain that I would have abandoned this project long ago if it had not been for your support. Thanks so much for your faith in me and for loving Frankie, though none of you ever knew him, as much as I do. God has blessed me with many special friends who always remember the anniversary of Frankie’s death. Thank you, Mary Jane Reid Maidment, Karen Konefal, Pam Budny, Carol Read, and Pat LaVoy Harris.

To the staff at City Hospital in Syracuse, New York, and the private physicians and therapists who cared for us and comforted our parents, thank you—Love, Jan.

I hope that if the family of the little girl who died from bulbar polio in City Hospital on May 11, 1953, ever reads this book, they will contact me. I derive comfort from the thought that the two Syracuse children who died of polio in 1953 are united in Heaven. Likewise, I like to picture my friends, Patty and Cheryl Munson, united with the young Syracuse gang.

On January 10, 2007, my orthopedic surgeon, Dr. John Kalamarides, left his earthly home. By now, I imagine that he has received his heavenly orders and is busy assuming the role of special guardian to the numerous physicians around the world who care for the acute and chronic needs of polio patients.

I continue to cherish my special friendship with retired pediatrician and public health official, Dr. Alice (Jaros) Turek. In February 2007, my husband and I flew to Florida to meet her.

Foreword

by

Alice (Jaros) Turek, MD, MPH

When I completed my medical school and specialty training in the early 1950s, we were in the throes of the worst polio epidemics ever experienced in our country. While I was an intern and first-year pediatric resident in Pittsburgh, Dr. Jonas Salk and his University of Pittsburgh team worked tirelessly to develop the vaccine that would signal the beginning of the end of worldwide polio epidemics. In 1965, I earned a master’s degree in public health, with a concentration in epidemiology, from Yale University. I was fortunate to be involved in President Johnson’s Great Society initiatives. My last position was as Director of Health for Manchester, Connecticut. I retired in 1983 and moved with my husband, Victor Turek, to Florida.

Enjoying retirement, I was certain that my days as a physician were behind me. How surprised I was when I received a call in early March 2006 from a woman who introduced herself as Janice Flood Nichols. She explained that both she and her twin brother had suffered from polio in 1953 and that they had received care at City Hospital in Syracuse, New York. Sadly, her brother had died two days after admission. She indicated that she had decided to write a book about polio and that, as part of her research, she had requested a copy of her twin’s death certificate. After noting that the certificate had been signed by Alice Jaros, MD, she immediately contacted Dr. Eric Luft, Curator of the Health Sciences Library at SUNY Upstate Medical University. Within minutes, we were speaking on the phone.

Although the number of yearly polio cases worldwide has been drastically reduced from 350,000 in 1988 to 1,997 cases in 2006, failure to contain and eradicate the deadly polio virus remains an important public health concern. We need look no further than the temporary vaccination boycott in parts ofnorthern Nigeria in 2003-2004 to appreciate the necessity of continued immunization. By 2006, the disease had spread to twenty-four countries in Asia, Africa, and the Middle East that had been previously certified polio-free. Fortunately, diligent public health officials marshaled the resources to contain the spread, but we are still playing catch up. As of June 2006, ten of the twenty-four countries still reported new cases.1

Unvaccinated individuals in both endemic and polio-free countries remain susceptible to the disease. Anyone who carries the virus has the potential to spread the disease to unprotected individuals anywhere he travels. In spite of the fact that over 95 percent of people infected with the polio virus remain asymptomatic or develop only mild flu-like symptoms, nearly 3 to 4 percent develop what is referred to as true polio. Unvaccinated individuals also run a small risk of contracting polio from a person who has recently received the oral polio vaccine.2

I pray that I will live to see the eradication of polio, a virus that has brought unimaginable suffering to countless patients and families. Polio vaccines have provided the necessary tools; personal will and political fortitude are required to accomplish the goal.

I am pleased to lend my voice to this story and welcome the opportunity, in coming pages, to discuss the history of polio, the progress that has been made in prevention strategies, and the global challenges that still remain.

True, Frankie’s and Janice’s story is only one story and a unique one at that. But, their story represents the deadly face of polio. Who would have thought that a death certificate, signed more than fifty years ago, would become the basis for a new adventure and a special friendship?

Preface

For those born before the early 1960s, your memories of polio may well include stories of friends, neighbors, or relatives who suffered from the world’s greatest crippler. You may even be a survivor.

For those born later still, your memories may be limited to recollections of a polio vaccine that you received as a child via a sugar cube saturated with the serum or through droplets placed directly on your tongue.

For many children and adults living in Third World countries, polio remains an active killer and crippler. For many present-day polio survivors living in developed countries, polio has disrupted their lives once again in the form of a condition called post-polio syndrome.

Polio is the story ofpeople just like Frankie, just like me. Frankie was a spunky six-year-old who loved playing baseball, collecting bees in jars, and climbing trees with his friends. Polio robbed him of his breath and his life in less than three days. Polio left his twin, fortunate to recover, determined to share this story. Sadly, polio may strike yet another child as you turn these pages—sadder still because a child can be protected, with vaccination, for as little as sixty cents. Polio can be eradicated. We’re almost there.

It’s up to you. It’s up to me.

Introduction

The narrative in this book is factual and drawn from my personal experiences and from conversations with the real-life characters who lend their voices to this story. My own story is told from an adult perspective, looking back as best I can.

In the book, you will meet many people: Frankie (my twin), Dorothy and Frank (our parents), Dr. Alice Jaros Turek (a resident physician at City Hospital in Syracuse, New York, in 1953), Betty Wightman and Pat Coolican (my aunts), Bob Paltz and Bonne Paltz Hall (my cousins), Betty Anne Read, Jeanne LaVoy, Louise DeMartino and Esther and Chet Sagenkahn (our friends and neighbors in DeWitt, New York), Dave (my husband who speaks as my spouse as well as a physician who trained under my childhood orthopedic surgeon, Dr. John Kalamarides), Brett Sagenkahn, Alan DeMartino and Gary DeMartino (our childhood friends), and Mary Jane Reid Maidment (my college roommate and lifelong pal). I have taken the liberty of adding pertinent medical and historical context to each of their voices. They speak as witnesses to our family’s story and to the greater story of polio, the disease.

Frankie’s voice is based on both my own memories and on episodes recalled by my parents over the years. He speaks as a bright, spirited six-year-old—the age at which he died of polio. As a Heaven-dweller he becomes more articulate, a little wiser perhaps.

The life that I envision for Frankie in Heaven is derived from the religious beliefs I held as a child. For the first few years after Frankie died, much of my time was spent trying to imagine what the afterlife held in store for Frankie. My parents told me that God had called Frankie home for a very special reason. I surmised, therefore, that he must have a very important job in Heaven. I have chosen to introduce the voice ofpolio victim President Franklin Delano Roosevelt in the Frankie chapters although I knew nothing of FDR’s plight at the time of Frankie’s death. Who better to greet and guide my twin in Heaven than the world leader who mobilized our country to provide aid and comfort to those afflicted by the disease and find a cure or vaccine to combat the killer virus?

Today, I remain a woman blessed with the same simple faith that sustained me through the hardest of times. I am enriched by the mysterious bond that exists between twins and continue to believe that we share connections with those who have crossed over. I live in the hope that someday, no one will suffer from polio.

Our polio story began in DeWitt, New York (a suburb of Syracuse), in 1953.

PART ONE:

TOUGH TIMES

Janice—A Twin on a Mission

The worst polio epidemics in the United States took place in the 1950s. In the fall of 1953, polio struck our suburb and our grade school in particular with a vengeance: my twin brother died, two friends eventually died from complications, and I and several children in my class experienced mild to severe cases of the disease. Nineteen fifty-three was an odd polio year in Syracuse, New York, in that the virus struck both earlier and later than was typical. Nationwide, 35,592 polio cases were reported that year: 15,648 cases were classified as paralytic; 1450 deaths occurred across the country.1

As much as my twin’s death, the death of friends, and my eventual recovery from polio continue to influence my life, until recently, I never considered writing about polio. I believed that my experience was simply a personal matter, certainly not a story that would interest anyone who didn’t know me. More importantly, I thought that polio was a thing of the past—how wrong I was!

A few years ago, I learned that the World Health Organization (WHO), Rotary International (through its PolioPlus program), United Nations Children’s Fund (UNICEF), the Centers for Disease Control (CDC), agencies of donor nations, governments affected by polio, development banks, private foundations, and pharmaceutical companies have spent the last two decades attempting to eradicate polio throughout the world. I was shocked to read that in 1988, when the Global Polio Eradication Initiative (GPEI) was launched, 350,000 people in 125 countries would be infected annually, in spite of the fact that the United States had been free from the wild type polio virus since 1979. The wild type refers to the polio virus that is found in nature. I spent the next several months combing books on polio, and my review of global polio eradication data continues.2

The relentless efforts of the Global Polio Eradication Initiative (the name given to the coalition mentioned above) have paid off. Vaccination has yielded remarkable results. In 1994, the Americas were certified polio-free, and the Western Pacific Region and the European Region were certified in 2000 and 2002 respectively. As of July 2005, over 70 percent of the world’s children lived in polio-free countries. Since 1985, the worldwide incidence of polio has decreased by 99 percent. The Global Polio Eradication Initiative is the largest public health endeavor the world has ever witnessed. Yet, polio continues to kill, disfigure, and disable children and adults in several Third World countries. Polio, the disease, has been largely forgotten by the industrialized world. Polio, the virus, has not forgotten the members of our global family who remain unvaccinated.

What are my wishes for the book?

I want people to learn something about polio without being subjected to a dry, medical textbook. Polio is a complex disease that has always had plenty of tricks (and surprises) up its sleeve. Even for those who remember the days of polio epidemics and those of us who live with the late-term effects of the virus, there is much to learn. Moreover, not all of polio’s mysteries have been unraveled.

From an historical standpoint, I want people to remember the horror of polio and to understand that the battle to find a vaccine for the crippler was fought long and hard. Without the support of a majority of American citizens giving of their time, talents, and treasures to the National Foundation for Infantile Paralysis (known today as the March of Dimes), polio epidemics could have well plagued the entire globe for several more years or decades. Likewise, foreign leaders, scientists, physicians, public health officials, and private citizens from around the world joined in the fight. Those born after the era of widespread epidemics should be aware of the efforts made by those who came before them.

I want parents to appreciate the importance of vaccinating their children against polio, especially at a time when some are questioning the value and safety of vaccination programs. For young parents, born after the age of terrifying yearly polio epidemics, it may be difficult to comprehend what the pre-polio vaccine era was like. I hope that you will consider our story when making your decisions. Current media reports, while informative, can also lead to confusion and misinformation. Therefore, please address your questions and concerns to your medical providers. The CDC and the American Academy of Pediatrics are excellent resources for parents. Additional online resource sites are included in a later chapter. We cannot afford complacency. Polio is an infectious disease without a known cure. Continued vaccine vigilance throughout the world is the only way to guarantee polio’s eradication.

My goal for this book is that in addition to providing you with insight into a disease that once terrorized the entire planet, you will consider contributing to the organizations still involved in the global fight. Polio eradication will not only prevent unnecessary suffering but also will free valued resources that can then be used to tackle other diseases that continue to confound the medical community.

You might say I’m on a personal mission. I don’t write as a renowned polio researcher, as an accomplished journalist, or as a well-known author. I can only speak as a child who learned to walk, run, and dance again, as a twin who mourned the death of her birth-partner long and hard, and as a rehabilitation counselor of the physically disabled.

I must warn you that the next few pages are full of facts and figures, but they are important facts and figures. So, take your time—I would like you to be familiar with them before we begin the deeply personal story of the Flood family’s bout with polio.

Our polio story, as I present it in coming chapters, can only be appreciated if we understand the nature and power of this devastating disease. Today, polio remains the world’s greatest crippler. If I were a betting woman, I would wager that few individuals in the western world are aware that between ten to twenty million people continue to suffer from disabilities caused by the polio virus. Conditions range from slight limps and leg-length discrepancies to paralysis and dependency upon respiratory aids. Many long-term survivors have developed a condition called post-polio syndrome whose symptoms range from fatigue, muscle and joint pain, and weakness to debilitation necessitating a return to braces, wheelchairs, or ventilators. Their struggle could continue well into this century. Present-day acute patients will require long-term follow-up and care as well; their struggle has just begun.4

In later chapters, you’ll learn about the history, cause, method of spread from person to person, symptoms, diagnosis, and treatment of polio through the voice of Dr. Alice (Jaros) Turek, a pediatric resident at City Hospital in 1953, when Frankie and I were patients at the facility. Dr. Turek will also discuss the classification of polio strains into virus Types I, II, and III as well as the development, differences, and historical controversies between the two types of polio vaccines (killed-virus or IPV vaccines and live-virus or OPV vaccines). For most of us, our knowledge of polio vaccines is limited to whether we (or our children) received the vaccine by shot, or drops, or serum-saturated sugar cubes. But additional explanation is necessary in order to provide you with a better understanding of the past, present, and future of polio eradication efforts.

Although the incidence of polio has been drastically reduced since the introduction of the polio vaccine some fifty years ago, setbacks continue to frustrate eradication efforts. Let’s take a brief look at some of the challenges that remain and the strategies that have been developed to end the spread of the virus, once and for all. So much has been accomplished since the Global Eradication Initiative commenced in 1988 that it would be impossible to cover the entire history within these pages. Therefore, I’ve included an extensive bibliography that you may wish to consult. I’ve focused on significant current data in the hope that you will conclude, as I have, that polio eradication is within our reach. Unfortunately, the opportunities are not open-ended.

You may find it useful to return to this chapter periodically not only to compare future reports to the present situation but also to gain a better appreciation for the various factors that impact eradication efforts. Moreover, the facts and figures presented in the next few pages are far too numerous to digest in just one reading.

Present Status of Polio Eradication Efforts

As I mentioned earlier, there is no known cure for polio. Therefore, polio is a disease that can only be eradicated through prevention. In the case of the polio virus, vaccines have proven to be a highly effective eradication tool. Fortunately, recent technological advances have aided in the dissemination of effective vaccine supplies. This is especially critical since the polio vaccine is especially sensitive to temperature factors. Polio vaccine supplies are now shipped with vaccine vial monitors (VVMs) that are attached to each vial of serum. The monitors record temperature extremes during shipment; and vials that have been exposed to conditions affecting potency are discarded. This advancement is especially important when we consider the climates of areas in Africa and Asia where the virus persists. The technology has been available since 1996. In addition to vial monitors, Vaccine Arrival Reports are also used to insure vaccine quality. When each vaccine shipment is received, it is inspected to insure that all safety and potency requirements have been met. Before these technologies were introduced, it was more difficult to ascertain compromised vaccine supplies that could impede prevention efforts.5

Due to the Global Polio Eradication Initiative’s ongoing massive immunization campaigns, polio remains endemic (constantly present but in low frequency) in only four countries: Nigeria, India, Pakistan, and Afghanistan—the smallest number of polio endemic countries in recorded history. But, for the past few years, there has been a disturbing increase in new wild-virus transmissions. For instance, while the July 2006 Rotary International PolioPlus Committee Statement indicated that Niger had been removed as an endemic country, it also reported that between early 2003 and mid-2006 the polio virus had spread to twenty-four countries previously declared polio-free. Fortunately, only ten ofthe twenty-four countries continued to report cases as of the mid-2006 report date. These countries include: Angola, Ethiopia, Indonesia, Nepal, Somalia, Yemen, Niger, Bangladesh, Democratic Republic of Congo, and Namibia. Sadly, an eleven-month vaccination boycott in Kano, Nigeria, triggered the recent outbreaks. The suspension had been initiated by local tribal leaders who, because of misinformation and distrust, believed that the polio vaccine was unsafe. 6

While recent setbacks have occurred, the success of the global partnership is evidenced by statistics offered by the same 2006 Rotary report. Since 1988, it is estimated that the Global Eradication Initiative has prevented more than half a million cases of polio each year. The 2005 initiative inoculated over four hundred million children in forty-nine countries throughout the world using nearly 2.2 billion doses of oral polio vaccine.

It would be easy to conclude that the successful history of the Global Polio Eradication Initiative coupled with the low number of new polio cases reported each year, is proof that polio no longer represents an international public health concern. But, the world cannot afford to be deceived by low yearly case count numbers. Thus, while GPEI indicates that only 1,997 new polio cases were reported in 2006, the sobering reality is that the coalition now predicts that if polio is not eradicated, more than ten million children could be paralyzed over the next thirty-plus years. As a polio survivor, this prediction sickens me. It is why I have written Twin Voices.

Current Eradication Challenges and Responses

To tackle the lingering outbreaks that have plagued the world over the last few years, the Global Polio Eradication Initiative has launched a number of new aggressive vaccination campaigns. One such initiative was undertaken to prevent the reestablishment of polio in the Horn of Africa. The campaign was deemed especially critical following the announcement that a new case of polio had been confirmed in Mogadishu, Somalia, in 2005. In spite of intervention, as of early 2006, cases