We began trying to have children in the early 1980’s. Like many couples at the time, we had postponed having children until we were both in stable and rising careers. After a miscarriage and several years of failed infertility treatments, we decided to adopt. Our twins were born in California. I’ll never forget the phone call in which the adoption agency director informed us that a birthmother had chosen us to be the parents of her twin boys. "There’s just one problem", the agency director said, "Adam, the oldest twin, has a heart condition. We have consulted with a pediatric cardiologist here and he says that it is very correctable by surgery when he is four or five. We have arranged for you to meet with him and discuss it before you accept custody."
So my husband and I flew to LA and saw the cardiologist. He told us that Adam was missing the right valve of his heart, a condition known as Tricuspid Atresia. The cardiologist said, "You needn’t worry about this because there is a procedure that will fully correct the condition when Adam is about 4 or 5. He will need to be seen by a cardiologist when you get to Houston, but he should not require any major medical intervention before the surgery." My husband and I discussed our meeting with the cardiologist and decided that we could handle the situation. The next day our sons were placed with us. They were 11 days old.
After about a week while the paperwork was signed and filed with the appropriate authorities in Houston, we flew home with our sons and the medical nightmare began. On the plane Adam kept arching his back and crying out as though he was in pain. I was able to comfort him and once we landed he fell asleep. Adam’s brother, Josh, woke early in the morning, hungry and active. Adam was lethargic. We fed him and he went right back to sleep. He slept for five hours before we roused him for a bottle. He wasn’t all that interested. Something told me that this wasn’t normal so we called the pediatrician with whom I had previously met. She told us to bring Adam to the emergency room at Texas Children’s Hospital. During the initial evaluation, the doctors asked whether he had received a cardiac catheterization in LA. They also asked what we knew about Adam’s condition. They were incredulous that we knew so little and frankly only half believed our version of what the cardiologist in LA had told us.
Late that night, they told us that Adam would be in the neo-natal intensive care unit and would receive a cardiac catheterization early the next morning. They said he could have died from the pressure changes during the flight and that he was going to require quite a few days in the hospital to stabilize. They said he would be on heart medication and if we were lucky, they could wait until he was 18 months old to place a shunt between his aorta and his pulmonary arteries. The problem was that he was not getting oxygenated blood to his lungs. He would ultimately require the Fontan procedure and they hoped they could wait until he was 5. This was a very serious condition they said, and he would require medical attention all of his life. The doctors realized that we had given them a true summary of what the cardiologist in LA had said after our pediatrician received a letter from that doctor detailing Adam’s condition and prognosis in the same glowing terms that he had presented it to us.
At this time we had private health insurance through my law firm. It covered all of our employees and their families. The policy said it covered all children born to or adopted by us. There was a pre-existing condition exclusion but it did not apply to children born to or adopted by us during the first year of their lives. The hospital had contacted our insurance company to confirm coverage and early the next morning we heard from both the hospital and the insurance agent that the insurance company, a subsidiary of Sun Life of Canada, was denying coverage because of a pre-existing condition. Up until that day, I had seen my husband cry only once before. When we got this news, he broke down. He wondered if we shouldn’t contact the adoption agency and return the children. Of course, we had already bonded with them and considered them ours so that alternative was unthinkable as far as I was concerned. I called a lawyer colleague and explained the situation. I had read the policy and knew what it said. My colleague contacted the insurance company and threatened to file suit if they didn’t retract their denial. Ultimately, this worked and they accepted coverage. There is no doubt in my mind that their initial refusal of coverage was intentional rather than a misunderstanding as they later claimed. Had I not been an attorney with access to some well-known trial lawyers, I doubt that the insurance company would have changed their determination.
Adam not only had a cardiac catheterization, he required a blood transfusion because of the blood he lost during the procedure. After a week, he crashed again and had to have the aorta to pulmonary shunt. He was on a respirator for two weeks. This first hospitalization lasted over a month and cost nearly $100,000.00. Texas law forbade an insurance company from cancelling their policy because they didn’t want to cover an insured’s condition but it did not forbid a company from raising the rates in order to make coverage unaffordable. During the next three years we lived from hand to mouth as all of our money went to pay for the premiums, deductibles, and medicines that were not covered. I was unable to work full time. We quickly gave up coverage that we thought we wouldn’t need in order to save on premiums. The first coverage to go was maternity coverage. Of course, I got pregnant right after that and so we had our third son without maternity insurance. Every six months, the insurance company raised our rates again. We were just trying to hold on until the big surgery. We lost our house. The oil bust and the banking crisis which occurred under the first President Bush during the late eighties through 1992 ate away my husband’s business. I had nightmares that we would be homeless.
By 1990, our insurance cost us $1,800 per month. Our deductible was $1,000 per person. At that point our insurance company sold the group to either Traveler’s or Farmer’s Insurance—a company with many thousands of people in their coverage pool. They informed us that our coverage would increase to $2,000.00 per month. We were about to give it up when my husband got a job with a federal government agency. The health insurance coverage for government employees had no pre-existing condition exclusions and covered all of us. The deductible was $250 per person. Maternity insurance was included. The cost to us, $150 per month.
Adam received his surgery in 1991 when he was three. He has had an excellent result in that he has not had to have any further surgeries as have some patients with his condition. He is however on Coumadin, a strong blood thinner. He also has learning disabilities. He developed OCD when he was a young teenager. Throughout his life, however, he has maintained a wonderful, ironic sense of humor. He is one of the most compassionate people I have ever met. He would give someone the shirt off his back and generally sees only the best in people. He is a gifted illustrator but he struggles with self-confidence. He has always struggled in school and can only manage a part-time load of courses in community college.
Adam’s situation points out the need for a low cost alternative to private health insurance. As was the case in our situation, where there is no competition, insurance companies will raise rates on coverage for people with serious and chronic health conditions. There was no reason other than greed for an insurance company with thousands of people in its insurance pool to raise our premium. And there was no reason other than the government’s ability to negotiate favorable rates for their employees for our health insurance to be so inclusive and so cheap (of course rates and deductibles have risen dramatically over the past eight years).
Adam is now 21. His coverage will end when he is 22 unless he is in school full time. What kind of coverage will he be able to get unless there is competition from a robust public option? It makes me so angry to hear the Blue Dogs and the Right-wing Senators claim that we don’t need a robust public option for health care. I am infuriated by their sense of morality. Most of them claim to be Christians and to have moral principles and yet their so-called "Christian morality" is for sale to the highest bidder. They have formed another kind of death panel-- one which would consign millions of Americans to high cost, low quality care and because they are so unprincipled and uncaring that they care more about campaign contributions and lobbyist perks than they do about their constituents. How ironic that the health insurance companies and their lobbyists claim to be defenders of capitalism when what they really fear is true free market capitalism where they must compete free of subsidies and government corporate welfare. What they fear is not socialism; they fear losing monopoly driven profits. And why, given the culture of corporate greed that gave us Enron, AIG, Lehman Brothers, Bear Sterns, Goldman Sachs, a banking crisis, GM and Chrysler, would anyone believe that corporate America is capable of running a national health care program? I wonder how many people are going to hear, "It’s not personal, it’s just business" as their family members suffer and die because there is no competition for services and costs?
For me, the 2008 general election was all about hope and change, particularly in health care. I don’t have any more money to give. I am working two jobs and trying to complete my Master’s thesis. I don’t have a lot of extra time to spend on grassroots campaigns to subsidize the lack of will and ability in the officials I worked so hard get elected. I have sent our story to the President, Senators Webb and Warner, and to our idiot congressman, Robb Whitman, a Republican in thrall to his party, the ideology of greed and immorality, the insurance industry and who could care less about the needs of his constituents. I expect President Obama, and Senators Webb and Warner to do what I elected them to do and that means, pass health care reform with a robust public option. Quite frankly, I am disillusioned, saddened, and disappointed that a Democratic President and a Democratic Congress which includes a super-majority in the Senate are so impotent in the face of lies, half-truths and greed. Were all those promises, "Just Words?"