The Right to Health: The Disparities in the Value Attached to Life in Iowa City and Uganda

By Florence Ochago

February 2008

In July 2007, while I was back in Uganda (Kampala), my son walked into my bedroom and found me packing my luggage to go on trip for work. “Mummy, where are you going? To the field?” he demanded to know. I replied, “Yes dear.” He stared at me and exclaimed, “Again!” I answered, “Yes, Sweetheart. Mom has to work.” He left the room visibly disappointed. His use of the word “again” left me thinking that ever since I joined the Uganda Law Reform Commission—an organization charged with the duty of studying and reviewing the laws of Uganda with the aim of making recommendations for their systematic improvement, modernization and reform—I had been traveling too much. I had as a result become an absentee mom. The mandate of the Commission requires public participation in the law-making process, which requires extensive travel to reach out to as many people as is possible.

A few minutes later, my son returned, claiming that he needed me to stay at home to take him to the hospital. He then showed me a small scratch on his arm. The sight of the tiny scratch he was making into a big case made me smile. He smiled back mischievously and sulkily asked, “Why don’t you stay home?” I managed to leave for work by bribing him with a chocolate bar and a “wilu” car along with promises of many toys and outings when I returned. I left feeling heavy with guilt for substituting presence with presents.

Two days later, I arrived in Moroto district, a pastoral community in North Eastern Uganda. My mission there was to interview people in the local communities about what they thought of the Children Act. The Act, enacted in 1996, is the principal legislation in Uganda relating to matters concerning children and their protection under the law. It provides interalia for the rights of children, issues of parental responsibility, child support, adoption, foster care and placement, maintenance of children, local authority support for children, the family and children court, children charged with offences and other connected purposes. At that time, (July 2007) the Commission was reviewing the Act with the aim of dealing with gaps and anomalies therein.

One of my interviewees in Moroto was a woman dressed in a tattered skirt and a blouse so thin that I could see right through it. She covered herself with a sheet that is a common cultural garb that serves many purposes. While I interviewed her in front of some grass thatched huts, a child (whose name I later learned was Emma) emerged from behind the hut. Emma caught my attention because he looked utterly uncared for. Mucus ran down his nose, and residue from weeks of not washing filled his eyes, threatening to cause him to go blind. He had a protruding belly exhibiting signs of malnutrition, and he was autistic. With several thoughts crossing my mind, I gazed at Emma for a while. My interviewee, who happened to be his mother, noticed and said to me in the local dialect, “Emma is my son. He grows, and that is okay. If he was not growing, I would be worried, but now he is taller than he was last year! His only problem is when he is hungry he injures his body with any object he lays his hands on. After he eats he is okay. Sometimes I take him to the hospital, but it is very far. You may walk there carrying him on your back and get no help! Maybe only paracetamol!” She went on to say, “I normally lock him in an empty house so that if food is not readily available he does not hurt himself. You see, when I let him out he can easily hurt himself if he is hungry especially on days when he has no breakfast. It is better for him to cry from inside than to let him hurt himself.” I was speechless. “So today he just escaped because I came here,” the mother concluded. Then another child emerged coughing incessantly. Each time he coughed, I prayed to God that his heart would not pop out through his mouth. This child was followed by another whose whole body was infected with scabies, and another with a suppurating sore on his calf which caused him to limp. I was disturbed by the seemingly endless list of sick children.

Two weeks later, with the Moroto experience still fresh in my mind, I arrived in Iowa City to pursue my LLM, where I found that an ambulance siren goes off two or three times a day around where I live and go to school. The differences in these two scenarios awakened me to the reality of the right to health. I immediately noticed that the ambulances in Iowa were mostly well-built vans, properly covered to protect patients from any other hazards as they are transported to the hospital. The ambulances in Uganda, however, were mostly double-cabin pickup trucks that are not covered, leaving the patient susceptible to several risks, such as falling off the truck in the rush to hospital or catching another infection along the way. Moreover, when not engaged in “ambulance work,” many of the ambulances in Uganda are engaged in other activities, such as making an extra dime for the driver by ferrying idlers back and forth, or collecting fresh crops from farms upcountry. After these exercises, the trucks are seldom cleaned.

Out of curiosity, I gathered from reliable sources that in Iowa City, every patient carried in an ambulance will be met at the hospital emergency room entrance with a wheel chair and taken straight to the emergency room for examination. These patients will on average be attended to within seven minutes of their arrival. The patient may have to stay overnight for observation even when no serious health threats manifest. In contrast, back in Uganda, if you called a government hospital for an ambulance in an emergency, you would be lucky if the phone is even on. Even if it is, no one may pick up, or the person who does is likely to be rude and unhelpful to you. A typical response from one of these operators might be, “What do you want? What? What? Who are you? Hang up!” If you get over the phone hurdle, you will be even luckier if the receiver admitted that the hospital has an ambulance available. Most times, many people have resorted to finding alternative means of having the patient delivered to the hospital. The irony is that hours later, an ambulance might show up at your house or in the vicinity thereof inquiring whether there was a patient around the area who needed help. One of my former lecturers at Makerere University in Uganda passed away in the midst of such fracas. A private missionary hospital and a government hospital let him die while they argued about who should pick him up and from where—this was a patient whose most immediate need at that time was oxygen. With what I have seen in Iowa, I now recognize the importance of prompt and efficient intervention as a key tenet of the right to health.

People like Emma’s mother in Moroto have to carry their ailing ones on their backs for miles to the nearest health centre, and once they get there, they must oftentimes wait in long lines. It may take an average of a minimum of one or two hours before one receives any professional attention. Any cries that their ailment is an emergency is met with a response that “everyone here is an emergency!” By the encouragement from other patients, they may persevere and stay in the queue only to be told a few hours later that the doctor is tired and cannot see them. “Come back tomorrow,” they say. These kinds of circumstances have led to several lives lost—not only of helpless children in the arms of their mothers, but also many young adults. I wonder whether the value attached to life in the U.S. is the same value we attach to life in Uganda.

Two months later, I visited a couple from Uganda (Harry and Hellena) living in Iowa City. During our conversation, the issue of health care came up. Hellena told me many interesting stories—three of which I think are worth sharing. She told me that in the late 1990’s, when she and Harry were still living in Uganda, she had to undergo surgery. When it was successfully done, it was time to transfer her back to the ward from the theater. She was still anesthetized when in her stupor she heard the nurses discussing how to transfer her from the theater stretcher to the ward stretcher. One suggested that they hold her by her braids and legs and throw her over. The very thought of her whole body being lifted by her braids brought her back to her senses. She raised her head to make them aware she had heard the plan and told them that whatever her state, she was a human being who deserved some respect and decent treatment. They were embarrassed and foolishly told her that they thought she was still in a trance and would not feel the pain. Has the health care system in Uganda lost its dignity?

I then told her that the situation has not changed since she was last at home. Even at Mulago, the only national referral hospital in Uganda and one that claims to have the best facilities and doctors, the situation is not different. Earlier this year, my aunt, who is in her mid-fifties, fell into a pit latrine and broke both of her legs. She underwent surgery after suffering grueling pain waiting first in the emergency ward and then in the casualty ward for a couple of days. What shocked me the most was that when we finally got her attended to, just one night after the operation, she was asked to give up her hospital bed for worse-off patients. She had barely recovered from the effects of surgery and needed, in my view, to be under medical observation. Rather than risk finding her transferred to a spot on the hospital floor, however, we took her home. Hellena then told me about one day, while here in Iowa City, she went home after work and started to feel really terrible. Harry insisted on calling the hospital and drove her there. Upon arrival, she was put straight into a wheel chair and taken into the emergency room. She underwent a host of tests, all of which turned out negative, but the hospital still insisted on keeping her overnight for observation. When I compared this situation with that of my aunt, I realized that a hospital bed in my country can be taken away at any time for reasons other than your official discharge from the hospital.

In the course of our conversation I intended to ask her what typically happens in a hospital in Iowa when a woman is wheeled in to the delivery room but I never got to doing so. Personally, I never had the “opportunity” of having to deliver in a public hospital in Uganda, but I have accompanied friends of mine who have had to do so. The treatment you receive from the nurses depends on their moods, how they view you and the people who have accompanied you to the hospital, and whether or not you are a private or a general patient. If the nurses suspect you have a bad attitude about the hospital or its services, they will tell you to just leave. Any attempts to seek help by calling out for the nurse will promptly be met by a reminder that you are not the first person to give birth in that hospital let alone the world! If you shouted for help during labor due to the excruciating pain they will ask you not to shout for them and may respond by hurling obscenities at you and asking you why you got yourself pregnant in the first place. Is it any wonder that we still suffer some of the highest infant and maternal mortality rates in the world? Many mothers, even prime gravidas (first mothers), are left to “sort themselves out.” In fact, many women prefer to deliver at home under the kind care of their unprofessional friends than go through a grueling exercise with so called professionals. This kind of scenario puts both the mother and child’s health at serious risk—such is the right to health for a pregnant woman and her newborn baby in many parts of Uganda. Moreover, it is no guarantee that in a private hospital or by having a personal gynecologist you will get any better treatment.

After all this conversing, Hellena’s child, Kyle, ran up to me and gave me a hug. Harry informed me that Kyle is autistic. I remembered Emma, whom I saw in Moroto, and I was keen to know what special facilities are available for Kyle in Iowa City. Harry then took me through the health care benefits Kyle is entitled to. The three sources of these services are as follows:

(1) the Iowa City Consolidated School District;

(2) Harry’s - UI health insurance, which in his case, but not in most, pays for speech therapy at the UIHC only; and

(3) the “Home and Community Based Services” or Medicaid Waiver, through which Kyle gets respite helpers around 18 hours per week, as well as Medicaid insurance to cover additional speech and occupational therapy - and other medical services.

In addition, under federal law, the Individuals with Disabilities Education Act (IDEA 2004), kids like Kyle are entitled to a “free and appropriate education” (FAPE). The law spells out what local school districts have to do in order not to violate the law. Harry added that eligibility and precise benefits for Kyle are determined by state Medicaid programs, although a lot of the funding comes from the federal government. He also informed me that there is actually no federal statute that makes Kyle eligible for Medicaid or a Medicaid “waiver,” which are joint federal/state programs. 

Kyle gets a combined total of 50-55 hours per week of direct intervention provided by these three sources. This includes about 30 hours per week provided by the school district, including his dedicated associate. Medical evaluations determined that for Kyle, FAPE requires that a dedicated associate be present to support him at all times. Kyle is also covered by two insurance policies. As a dependent, he qualifies for coverage under Harry’s health insurance, which Harry gets as a University of Iowa employee. Although this particular insurance ordinarily does not pay for speech therapy in the case of a developmental disability like autism, it covers Kyle’s case because it can reasonably be believed that Kyle’s speech delay is a result of the meningitis he suffered when he was two weeks old.

In addition, Kyle qualifies for a “Home and Community Based Services” (HCBS) or Medicaid waiver for mental retardation because on a standardized intelligence test he scored “severely to moderately retarded.” This program is administered by the Iowa Department of Health & Human Services, through its Johnson County office. He must be retested every 7 years and score under a certain IQ in order to maintain eligibility. The waiver provides an array of possible services. Its primary benefits are the respite workers (Tricia and Nymia) that go to Kyle’s house about 18 hours a week. An incidental benefit is that the waiver makes him eligible for Medicaid insurance, which pays for a huge number of things that Harry’s insurance won’t cover, such as extra speech therapy and occupational therapy. It also covers the co-pays on the primary insurance when they apply to services for him. The state Medicaid office also reimburses Harry for a portion of the premiums required to maintain the primary health insurance with the university.

The combination of school time, speech and occupational therapy at two different places (paid for by two forms of insurance), and the respite hours provided by the HCBS waiver total to 50-55 hours per week of treatment and care. The state program has also bought Kyle an 18 foot trampoline and deluxe set of bongos.

While I sat there bedazzled at what seemed like a perfect system, Harry pointed out some of the flaws in the system in Iowa. He explained that Kyle’s access to these services was completely dependent on his own determination to make the systems (school district, UI insurance, HCBS waiver) work for his son. He noted that several of the poor and the uneducated members of the community often do not get the same level of services for their autistic children. He attributed this to the fact that the school district fears backlash from the more affluent and educated parents who can stand up for their rights. Because of this, he said, the poor people do not learn how to access state services. He also mentioned that if the school district had a choice, providing a full-time, dedicated associate is something they only willingly do when they know they are dealing with a parent who threatens to sue them. They know that in the event of such suit, they will most likely lose in court. He concluded by saying that the school district itself does not provide health insurance.

I then remembered Uganda’s Health Centre II to which Emma’s mom would have the easiest access. I tried to compare it to the flaws Harry had mentioned but it would not fit anywhere near what I had just heard. The Centre is manned by an enrolled nurse who might have only had a week’s introduction to the subject of autism during her training. I also realized that even in the near future, Emma and children like him, would still have little chance of ever being examined by a medical officer as the government was only planning to restructure and provide for comprehensive nurses in the public service in order to have them take over heading the Health Centre II. Kyle is also under the care of a psychiatrist who is responsible essentially for his medication. I muttered under my breath, “This never happens in Uganda.” Besides the fact that we have less than ten psychiatrists countrywide, it is common practice to just buy a child any medication available that one would speculate may give him/her relief. With so few psychiatrists, how can we afford to allow one to dedicate his or her practice wholly to children with special needs?

Hellena then told me about her experience in Uganda. A friend of hers has a child with special needs and has to make private arrangements and pay heavily (approximately 23 U.S. dollars per session) to get him get any special attention. She is lucky if she can afford it at least once a week, with the absence of concrete government interventions and no health insurance plans. The question is how sustainable is this on her public service salary, which amounts to a mere 294 U.S. dollars each month? What about Emma, whose mom is a peasant? Hellena told me that these issues motivated her to start up a program on autism awareness and support in Uganda, but she was frustrated by endless red tape. She spent months bouncing back and forth between institutions and could not even access something as basic as statistics on children with special needs until she gave up on her “crazy” idea. I then suggested to her that it seems, in the absence of any reasonable statistics, the government’s plan to take care of children with special needs is far from being hatched.

As we all sat on the couch quietly meditating on our discussion, the thought that came to my mind was that in my country, one of the areas that consumes the biggest amount of the budget each year is the health sector. Yet, it is extremely difficult to fathom where the billions of dollars go each year. I wondered why the Ugandan Constitution contains a provision guaranteeing the “right to health” to everyone. I kept asking myself what it means to truly have a right to health. Is it what the children with special needs in Iowa are getting? Is it more or less than that? Who sets the standards? What parameters do they use? Can we achieve a universal meaning of the “right to health?” Who is to blame for the poor health service delivery in Uganda? Is it the Western powers? Is it bad governance that has left many impoverished as funds meant for their health care are diverted to personal use? Is it lack of respect and understanding of medical ethics? Do the children with special needs in Uganda not deserve to go to the hospital and get attention for their conditions? Even when I think what I have seen is pretty impressive, I hear many Americans complaining about their health care system. Are those little flaws Harry mentioned of the Iowa system worth complaining about amidst the plight autistic children in Uganda face? Is it because in the U.S. they do not have socialized medical systems like their counterparts in Canada? Where is the problem?

Emma’s mom could commend Uganda’s government only for the massive immunization programs they have carried out in the last five years, which has achieved several good results such as eradicating polio from Uganda. She actually confessed that “the government” goes to their door steps during immunization campaign days, and defaulters are subjected to penalties by the village local council. She also noted that in other areas, she did not see the government. I remember her questioning whether government-supplied immunization is even enough, especially since many of her relatives had died of malaria. I agree with her that malaria should have been eradicated by now, yet it is still the leading killer in Uganda, followed by HIV/AIDS.

My mind lingered and I remembered my son, Nathan, and his pretend laceration. I thought to myself, Nathan has a point after all—it all starts with taking routine health checks and taking care of even the tiniest lacerations, and that, it seems, is when the realization of the true meaning of the right to health begins. It should be for the health professionals to announce that there is no major problem with an individual’s health than for the state to act negligently in fulfilling one of its core duties.

I jumped up from my trance. It was time to go home. As my hostess walked me to the door, she informed me that in the U.S., no hospital can legally turn away anybody with a life-threatening situation. The health service providers have an obligation to stabilize a life before they can turn them away from the hospital. I just burst into laughter and responded, “Well then, all the hospitals in Uganda would lose billions in costs and have a hundred and one suits pending in the courts of law.” She told me of a real-case scenario where millions of American tax payers’ dollars have been spent on treating a non-American child whose condition will most likely never be cured because the hospital would rather be stuck with the child than face phone calls from lawyers.

As I headed home, I came to the conclusion that as much as the U.S. health care system has its flaws and, according to Harry, different people are oftentimes treated with different standards, it still is obvious that there is a mile of difference in the value attached to life in the U.S. compared to that in Uganda. This is reflected in their respective health care policies. Each of these countries has a differing understanding of the need for human preservation and of the notion that each life counts. Who then will set the standard for the right to health, if even Americans find their system unsatisfactory? Is it possible to satisfy everyone with one system? What is the right to health anyway?