Statement of. Margrily Garcia. of the. New York City Health and Hospitals Corporation

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Transcription:

Statement of Margrily Garcia Patient of the World Trade Center Environmental Health Center of the New York City Health and Hospitals Corporation Examining the Continuing Needs of Workers and Communities Affected by 9/11 Before the Committee of Health, Education, Labor and Pensions United States Senate June 29, 2010

Hello and good afternoon, Chairman Harkin, Ranking Member Enzi, and Members of the committee. Thank you for inviting me to speak with you today. My name is Margrily Garcia, a patient in the survivor program at the WTC Environmental Health Center, known as the WTC EHC, that's run by the New York City Health and Hospitals Corporation. I am a patient there, and I am here today, because I got sick from the aftermath of 9/11. I also express my gratitude to Senators Gillibrand and Schumer of my home state of New York, and to all who are here today in support of the James Zadroga 9/11 Health and Compensation Act. I honestly feel Dr. Joan Reibman, the Medical Director of the WTCEHC, could better explain why we in the Survivor program got sick on that day. I don't know all that she knows but I do know that I am one of the people who has suffered great health loss since that day. I am a shadow of who I use to be before 9/11. The person who I've become started changing soon after 9/11, because of all the dust and chemicals that I inhaled, the trauma and fear endured that day, and the uncertainty of the days thereafter. I am told over 4,700 people are now being treated at the WTCEHC, and tens of thousands more are in the Fire Department and Responder programs. I certainly don't know all of them, but I have seen many sitting next to me at the WTC clinic at Bellevue Hospital. We all have similar health issues but we're still very different. Some of us are sicker than others and I pray equally for all alike. It is my fear each day to not be well or get worse. With expert reliable care, all of us have a dramatically better chance of living healthier longer lives. Through no fault of their own, doctors in the community don't know what our doctors know with their thorough research and specialty care. I went that route and for years I only got sicker. We need these programs and doctors who are better qualified to offer the special medical treatment that we need and deserve as upstanding citizens of this country. We benefit from their knowledge and expertise from the years that they have of treating thousands of people who were there that life-changing day of9/11. I ask you to hear my story as just one example of those thousands who obviously are not physically here today, but each and every one of them are here with me in my heart. I was born in New York City and raised in the Bronx. It was friends and family there who first heard of the special treatment program at Bellevue Hospital Center for people who worked, lived, or went to school in Lower Manhattan on September 11,2001. They urged me to check it out because they had become increasingly concerned about my constant debilitating cough and just how much my health had changed after 9/11. 2

On that day I was a healthy 28 year old woman employed as a paralegal at a firm on 90 Broad Street, about a 10-minute walk from the World Trade Center. My coworkers and I evacuated from our office shortly after the north tower collapsed. We decided to head to a co-worker's apartment in Brooklyn, because we wanted to stay together, and we thought we would be safer there. All transportation was closed down, and I had no means of getting home to the Bronx on that fateful day. I was covered in dust and soot from head to feet as we crossed the Brooklyn Bridge. A week later, I, like thousands of other New Yorkers, returned to my job in Lower Manhattan determined to do the right thing during a time of national crisis. Getting to and from work so soon after the horror of that day was challenging. No one can truly accurately describe the sights, horrible smells and constant dust we all endured for so long. Our hearts broke everyday as we tried to resume our normal lives and daily routine in spite of the remembrance of many lives lost that day. Within just a few weeks I developed a persistent cough, which was surprising and confusing to me because I had rarely been sick before the terrorist attacks, other than a brief cold or flu. No allergies, no ill health of any kind that could explain why I suddenly was getting so sick. Everyone else in my office looked ok to me at the time. My health deteriorated so badly throughout the years after 9/11 that I was forced to move back in with my mother because I simply could not manage my life on my own anymore. My primary care doctor had diagnosed me with bronchitis and asthma but I didn't respond very well to the medications she prescribed. I felt like hospital emergency rooms and doctors' offices had become my second home. By September 2006, my constant coughing had become disruptive and disturbing to my co-workers at my new job, threatening my ability to keep my job and the private insurance that paid for my ever-increasing doctor and ER visits. At my family's urging I finally called the WTC EHC at Bellevue Hospital Center in September 2006, which now has sites at Gouverneur Health Services and Elmhurst Hospital Center, and have been a patient there ever since. I was coughing so hard the day I called, the woman who answered the phone advised me to immediately come in that same day but I couldn't. Instead I made an appointment and advised my superiors at work of that appointment. I was afraid that my constant illnesses would compromise my employment because I had missed so many days already by calling in sick. I'm still constantly afraid of losing my employment due to my illnesses. Being here today was a sacrifice to my job but I'm happy to be here and make your acquaintance. Because so many others cannot, I want you all to know who I am and how I came to be here to share my story with you. I had to visit the ER later that same week because my coughing would not stop, I was in serious pain because of it, and my asthma was out of control. Despite lack of sleep and pure exhaustion, I was determined to keep my appointment at the WTC clinic, which helped people with symptoms similar to mine who hadn't responded to prior medical treatment. I'd had enough and I thought that I was going to die if I didn't receive immediate help soon. 3

I found out my condition was even more severe than that of many other WTC-exposed patients they had seen. After a series of tests, they diagnosed me with both chronic asthma and sarcoidosis, a kind of scarring that can affect many different organs in the human body. I learned that rates of sarcoidosis increased among frrefighters who responded to the WTC disaster in the first year after 9/11 compared to previous years. In my case, though sarcoid is more typically found in the lungs of WTC patients, it was my heart that had been scarred. It was so bad that there were disruptions in my heartbeat that was causing less oxygen to reach my lungs, and worse, I was living with the possibility of sudden death. I had to have a pacemaker/defibrillator installed to help save my life. Worse I had to have this surgery done three times in a year for necessary adjustments to ensure that the pacemaker/defibrillator would indeed save my life. Most recently I had to have sinus surgery which I've been told is not uncommon for many of us who suffer from chronic sinus inflammation due to all the irritants we breathed in. He showed me my sinus CT scan and explained that no air was entering through my nose because of all the nasal polyps blocking my airways. The ENT doctor was impressed with how bad my case was and asked permission to take a picture of my face and show it with the CT scan in a seminar he was conducting as an example of a worst case scenario. I was not impressed. In fact I was very sad and concerned that yet something else was very wrong with me. Sadly, I am a medical phenomenon. I now return every 2-3 months for a checkup with several specialists, sometimes more often, and my visits to the ER have considerably dropped off since I became a patient at the WTC Clinic almost 4 years ago. My health became permanently impaired at a young age and I know I will never be like I was before 9/11. I continue to adjust to this new me, this new normal that is now my life. I know I am blessed with people who love and support me. I am happy to say that now my life includes the man I married on May 29th of this year. All newlyweds have their challenges but he and I must continually adjust to the debilitating physical and mental hardships that face anyone with chronic illnesses, including the fact that I so easily get winded and am almost constantly sick in one way or another. In addition, I've had to sacrifice leisure time; time that I can spend with loved ones for medical time. As you all know time is very precious to us all especially when you're sick and time is threatened and becomes critical. However, I'm hanging in there, and my husband and family members are hanging in there with me. But we all know that my scarred heart and asthma will require a lifetime of specialized care, monitoring, and treatment. 4

We all take some comfort in knowing that the program that helps me has been partly funded from 2008 through 2011 by a grant from the federal government. I am here today to support the 9/11 Health and Compensation Act because federally funded monitoring and treatment must be reliable and always available for us because our very lives depend on it; not just year by year but for anyone whose health was affected by the terrorist attacks on our nation. I need to know and trust that my government will protect and help us live better productive lives. The WTC healthcare programs you are hearing about today are very similar in how they go about caring for us who are sick. The responder programs are mostly overwhelmingly men, good strong brave men who did the right thing that day and the days and months after. Many of those men are not so strong anymore. We of the community did the right thing too. Many of us men, women and children are not so strong anymore either. However, in our numbers, even if we have weakened bodies and voices, I pray with all my heart that you hear and see us as loud and strong advocates for the bill you are considering today. Collectively we are the firefighters, police officers, other responders and rescuers. We are the people who soon came after to help in the clean up and we are certainly those who lived, or worked, or went to school in the area. We are the same people who not only were going about our normal lives; we still refuse to let the terrorists win. We went back to our workplaces, and our homes, and our schools, because we were told it was safe to do so, and we believed that our city and our country needed us to do just that. We proudly reported to duty. We knew it was the right thing to do then and we humbly ask you today to please do the right thing for us now. Thank you kindly for your time and patience with me. 5