Dr. Major shares his personal story of encountering tuberculosis patients and discusses what we need to do in order to improve healthcare standards and lower the incidence rate of tuberculosis among children.
Tuberculosis (TB) continues to be one of the most complicated and fatal respiratory tract infections. As the number of cases of both TB and antibiotic-resistant TB continue to increase, many are beginning to look for ways to improve current healthcare standards. In a personal account, Dr. Majwala Meaud Major does just that, recalling personal experiences with TB patients and providing suggestions on how we can improve global healthcare practises.
This is his story:
The state of health facilities in many developing countries, especially in Africa, is appalling in that many patients seek medical attention to save their lives and find none or end up losing their lives. This is upsetting because it renders the recent campaign by the World Health Organization (WHO) to boost staffing in health facilities a non-starter. It is a true story that the state of health is under stress in the developing world. We can take Uganda as an example to explain what is actually happening in the health sector, which is under stress in most Sub-Saharan countries. The Ugandan Ministry of Health Statistical Abstract of 2014/2015 shows that there were 265 health center IVs (located at the sub-county level) in 2015 up from 175 in 2011. The boost in the number of health centers is welcoming and a commendable development since health center IVs are also the primary health units in many districts which do not have a hospital. However, the feeble performance of these health centers is a drawback that requires urgent attention.
Health is wealth, and no government program can be successful without a healthy population. Some of the revelations at certain health centers are unbelievable. For example, at the Kassanda Health Center in the Mubende district (located in Central Uganda), a woman who is admitted is immediately transferred to another ward and “given space on the floor”! And usually no extra medical attention is given to them and their babies because of lack of equipment, medical practitioners, medicine/drugs and even lack of equipment. Such action is likely to cause dire consequences to both the mother and newborn. Men, women and children are admitted to the same ward.
The shortage or total absence of drugs and sundries, very few or total lack of medical professionals, broken-down ambulances, and lack of water and power in these health facilities paints a grim picture of the situation in the health sector of Uganda. Yet South Africa, Malawi and Botswana are most affected by TB. In Africa, for instance, TB statistics on both infection and mortality are worrying. The WHO statistics have estimated the incidence of TB to be 450,000 cases in 2014; TB continues to be one of the leading causes of death in South Africa. WHO gave a figure of 250,000 deaths from TB in South Africa in 2014 but this excludes those who had both TB and HIV infection when they died; these people are considered to have died of HIV/AIDS. This means about 1% of the South African Population (54 million) develops TB disease each year. TB in Africa has the third-highest incidence rate worldwide, after India and China, and the incidence has increased by about 400% in the last 20 years. With this information, it is clear that taking action is very vital and urgent if we are to redeem the health of African population, especially children.
Let me share a real story I experienced in the field early this year. During a monitoring visit for one of our voluntary programs with Mr. Kasozi Dickson of Humanity Direct (a UK-based health charity that provides free surgical operations to the poor and disadvantaged children who could otherwise not afford surgery), we gave out clothes and other items to vulnerable children. These items were given to them by a warm-hearted lady who has dedicated most of her time to sharing her life with voiceless and vulnerable children! This beacon of hope, Lisa Kreiner, is a single mother who works at an Orthodontic Dental Office in Frederick, lives in Thurmont, Maryland in the United States of America. She is also part of the wonderful organization “Dress a Girl around the World”, helping as many charities as they can lay their hands on, to make a difference in the little girls’ lives.
With such work, and more so doing some investigations as a journalist, she helped me come across a referral slip made by a pharmacy staff member referring a 32-year old woman to the Directly Observed Therapy Short course (DOTS) health center. The DOTS program is a TB control strategy recommended by the World Health Organization. Looking at the symptoms circled on the slip, one could tell that this was certainly a pulmonary TB case; weight loss, fatigue, chest pain, fever and coughing with blood. We traced the referral to one of the district health centers where we found out that the woman had indeed gone for further evaluation. She was checked, diagnosed, given medication and sent home. We were told by the health center staff that since the first visit, she had returned twice, each time sicker than before and would be sent home again, no TB! We decided to visit her at home where she lived with her husband, her in-laws, and two small children and one baby.
We asked the district TB officer to join us so he could follow-up later on. When we arrived in her small house we were taken up in her room, she was sitting on a straw mat on the floor, baby on the breast, glassy eyes, and face flushed with fever. She repeated the same story that the health staff told us; she told us how disappointed, sad and scared she felt, she said she was getting worse by the minute and no one could help her. She said she wanted to go back to the health center but they didn’t have any more money or means of transportation. Each time she coughed, she hit on her chest to show us where it hurt. I will never forget the pain on her face and the sound of the shortness of her breath when she tried to tell us her story. I will never forget the fear I felt for the baby on her breast and her two other children and thinking that this woman, unless treated immediately, would soon die and leave these children orphans. The end of the story is that the woman did have pulmonary TB and the last we heard was that the district officer was trying to get the children tested with the help of Healthcare Volunteers Uganda, a local NGO working in the area to bail out vulnerable children from poor families by offering them free direct healthcare and medical services.
So what wrong? Why did this woman seek care three times and still was sent home with a bag of antibiotics and vitamins? This is a very common story and it is happening every day, many times a day around the world, especially in developing countries with a high TB burden. I share this story because I truly believe we might not be able to reach the goal of zero children’s TB cases in our lifetime, let alone by the year 2030, if we do not take some drastic steps to address the real problems that are preventing us from doing a good job. We can have guidance and operational plans for children with TB; we can have treatment algorithms. However, I strongly feel these will not help much, especially in limited resource settings where stories such as this are real, unless we start by holding governments accountable for the health and wellbeing of populations under their jurisdictions. Health is a right not a luxury, and so, we can advocate for the increase of health staff salaries, to motivate them to perform appropriately. Health staff in developing countries often do not get their salaries for three to six months, and may even wait up to 18 months like the case of staff in Zimbabwe, Gambia and Burundi.
Strengthening the DOTS Program could also help reduce the cases of TB. If there was a quality DOTS Program, health staff would have been able to accurately diagnose and successfully treat the mom in the story. They would have been able to prevent TB and the needless suffering of her children.
I also suggest integrating TB training into primary health care or in all community-based healthcare projects and familiarizing all health care providers on TB. Once educated, health staff can screen children and mothers during immunization sessions, post-natal visits, reproductive health (RH) visits or other consultations. By recognizing the symptoms of TB in children, creating linkages and partnerships between communities, government facilities, private providers and TB Services, we can enable full participation and involvement of all stakeholders. If treatment for TB is administered in a proper and timely manner, we can ably cure it. Successful TB treatment depends on close cooperation between the patient and the healthcare provider. In most cases, proper treatment with the right antibiotics for the right amount of time will cure TB; cutting down on alcohol consumption, avoiding smoking or taking drugs, getting plenty of good quality sleep, maintain personal hygiene and good nutrition can also do us good.
As well, increasing contact tracing and testing to all family members, most importantly to children, when TB is suspected in a family member could lower the rate of TB incidence. The majority of children in developing countries get TB from a family member. TB is a poverty disease; half of all children in developing countries frequently go without meals and as a result, they are malnourished, which makes them more vulnerable to TB. Addressing the nutritional needs of children is also of paramount importance. TB in a child that is already living with HIV/AIDS is a double heartbreak and so much more difficult to diagnose and treat. Unless we can diagnose and successfully teat the mother or the infected care giver, we will fail to properly diagnose and treat the child. The majority of children who get TB disease will get it from a parent or a close relative. The longer the child is exposed to an infected caregiver, the greater the risk of transition.
Tuberculosis is a very pressing problem and things are moving very slowly. We cannot afford to move slowly any more, we should not allow it. We need to start acting very fast. What we should all see by the end of 2020 is not just statistics showing fewer deaths from tuberculosis among children, but also children with happy and smiley faces, children free of tuberculosis. Where there is a will there is a way and I hope that collective voices will find the way.
Written By: Dr. Majwala Meaud Major