Towards the end of January 2015, a resident of Temirtau living with HIV finally received infant formula for her child, for whom the breast milk substitute is required by law. The clinic that the baby was conceived in had not received baby formula since September of last year, that is for almost 4 months.
The author of the investigation is Svetlana Egorova, journalist of Headline.kz, Temirtau, Kazakhstan
Women with HIV must not breastfeed. It seems that this long established truism is known to all. To reduce the risk of HIV transmission from mother to child, newborn baby relies entirely on artificial feeding from his first day. “Children born to HIV-infected mothers are provided free baby formula for the entire period of infancy, from birth to 12 months, by Primary Medical and Sanitary Care (PMSC) organizations in the community” from April 18, 2012, according to the order №272 “On prevention of HIV transmission from mother to child in the Republic of Kazakhstan” by the Minister of Health of RK.
24-year-old Saule (not her actual name) living with HIV, became a mother in October 2014. She visited the pediatrician clinic №1 three times, and all three times she wondered whether or not she will be given the necessary baby formula.
“We visited the clinic once a month, as required. The nurse would always give the same answer: ‘there isn’t any baby formula, wait until next month’. They said that “Nutrilak” baby formula will be available – says Saule. “In order to feed my son, I would buy “Malyutka” infant formula, a large 700-gram pack. The price of one pack was 2,215 tenge, which lasted for about 1 week.”
Four packs of baby formula were needed in a month, costing 8,860 tenge. This was a substantial cost for Saule and her husband. Their monthly income for a family of 3 persons consisted of the husband’s salary of 50,000 tenge and child support in the amount of 13,000 tenge.
Saule was the only one among HIV-positive mothers of Temirtau who was not afraid to discuss about the lack of infant formula with us and the representatives of NGO “My Home”, which helps people living with HIV.
“Over the past 2 years we have been approached with a similar problem by five women living with HIV. It is only those people who are not afraid of possible conflicts with doctors, who want to change the situation” says CEO of the Temirtau NGO “My Home”, Elena Bilokon, who is also the chairman of the “Kazakhstan network of women living with HIV”. “In some cases, together with representatives of the city’s AIDS center, we had written petitions addressed to chief medical officers of clinics, and telephoned others. After our intervention, the problem was resolved, and the women were immediately given baby formula. We had a case where a woman gave birth in December, but she was told that she could receive infant formula only in March. Another mom was not given baby formula for 2 consecutive months. We had to write a letter, and the problem was resolved. In other cases, I simply explained to women that they should immediately approach the chief medical officer. The problem of inadequate baby formula occurs regularly, especially at the beginning and toward the end of the year. The objective of our organization for the near future is to conduct regional monitoring on provision of free infant formula for children born to HIV-positive women, and to submit a report to the “UN Women”. In the meantime, I advise the following to the women with HIV who are faced with a similar problem: please contact us at NGO “My Home” at 90 00 95 or at the following address: Pionerskaya Str., 59, Temirtau.”
The following are stories of other women living with HIV who received infant formula in 2012. Back then provision of infant formula was equally inadequate. Lena is registered at the clinic №2. Her child is now 2 years and 7 months old. At 1 month, they went for their scheduled appointment. There, they were given 1 pack of formula. “It was very little, of course” says Lena. “Sometimes they would not give anything. At most, we would get 2 packs a month”. In 2012, breast milk substitutes were allocated at the pediatrician’s office. They [mothers] had to buy more of the formula on their own; luckily, their parents helped them. Lena did not enquire anyone about the problem, either verbally or in writing. However, she signed for all the obtained formula packs. Once she asked why they were not given the required amount of infant formula and was told the following: “There are many people like you, and infant formula is in short supply.” Oksana, also HIV-positive, wrote a complaint, and she immediately received 8 packs, though it happened only once.
Are there really that many people like Lena, Oksana and Saule (i.e., women with HIV who gave birth)? To the point where they cannot provide an uninterrupted supply of infant formula for their babies? Based on the report by the regional center for the prevention and control of AIDS, in Temirtau a total of 21 were born of HIV-positive women in 2014. The number of pregnant women was 31. How difficult is it for chief officers of pediatric clinics to apply for sufficient amount of infant formula for all these children? Or is there another issue?
Together with Elena Bilokon and Chief Inspector for the protection of women against violence of the Administrative Police of Section of Temirtau Department of Internal Affairs, Sergeant Major Svetlana Garkusha, we have prepared a written request to the Health Department of Karaganda Oblast (HDKO) and to the pediatric clinic №1. We wanted to know why the laws were not being properly enforced.
The baby formula is already here
The Deputy Director on medical issues of the hospital “Polyclinic №1 of Temirtau” Mr. Vasiliy Kovrygin responded almost immediately. Being open to dialogue, he made a very good impression.
– I do not understand how a pediatrician may refuse to provide foodstuff to a baby. It is impossible that the young mother was simply told that “there is no infant formula and we don’t know when they will be available”.
– On January 26 we called Saule, and she said that she had gone for her scheduled appointment in the middle of January and was told there was no infant formula available.
– We will go there right now, I will take you with me. In 2014, HIV-positive women gave birth to five children – and I am referring to those registered in our polyclinic №1. And they all received baby formula from us, I know that for certain. If someone did not receive it – and that could happen – it was because we ran out of baby formula in November. What should women do? Buy the formula on their own. From January 27 of this year, our infant formula packs are available for distribution. We received them. There is a tender for procurement. We are working with a dairy company. All children – those born to HIV-positive mothers as well as other categories of bottle-fed infants – receive baby formula in full amount. We have no right to refuse provision of baby food, especially to children born to HIV-infected women. Because when these women become pregnant, they will be registered at AIDS Center and receive antiretroviral therapy. We know all of them as they are all registered with us. All pediatricians know when these babies will be delivered. Because we have no right to give such a child even a sip of mother’s milk.
– But I understand that toward the end of the year some sort of a problem may occur with that?
– It is not always possible to accurately calculate the required amount of infant formula. We plan a certain number of packs, however, after labor some women are unable to lactate due to some stress and social problems. So we transfer these infants to artificial feeding scheme. Naturally, the number of children in need of baby formula increases.
– But the number of children born to HIV-positive women does not grow. They should be the first to receive baby formula, and then all the other categories, isn’t that right?
– But the nutrition is the same. There are few children born to HIV-positive mothers. But there are many additional unanticipated bottle-fed infants.
– Are they all in the same list?
– Of course.
– That is to say, children born to HIV-positive women do not have any advantage in this “queue”?
– They have an advantage – they are first to receive nourishment. That is a must. I will say it again – these children cannot have even a sip of their mother’s milk.
– But what happens with the supply of infant formula in November?
– That is not our fault. We immediately distribute all of the formula packs as soon as they are delivered to us. The supply ended in November. Usually, the stock is depleted at the end of the year. Actually I was worried that the tender will come through in February. But it turned out better – it is because the Health Department of Karaganda Oblast worked well. They called for tenders earlier, and today I can say with a clear conscience that we have sufficient infant formula. The company wins a tender and begins delivery.
Vasiliy Ivanovich said that each child in Temirtau should receive 8 to 10 packs of infant formula every month. It depends on the age of the child and his needs. They are then given corresponding amounts, and it is sufficient for every infant.
– Each pediatric clinic separately applies for the infant formula to the Provincial Department of Health. Procurement of baby food comes from the regional budget. The company that won the tender reviews these applications. And its representatives must make sure that they can provide the right amount of infant formula. At times, we may have disruptions of 1-2 weeks due to suppliers. This is all.
– What should women do if they are from socially disadvantaged groups and cannot afford to purchase the baby food?
– In this case, they should contact the Department of Social Protection for help. If they do not have money, and they cannot obtain food for their infant, they will be eligible for a financial aid. Prescribed infant formula is given away for free at distribution center on the first floor of our clinic. Until November of last year, there was a private pharmacy at that location. Previously, the same baby formula was issued at the pharmacy, but apart from that various medicines were sold there as well. Now this center supplies only infant formula. Prescription is written by the local physician; it can be taken either during the scheduled appointment or delivered by the nurse during the routine visit to the baby’s home.
– Whom should patients approach if they have a similar situation? What should they do if they are told for the third time that “there is no more infant formula, we do not know when it will be available”?
– First of all, there is an administrator of pediatric department. She mostly interacts with the pediatricians. If the woman (patient) is not satisfied with the response of the administrator, then she can consult with me. If it is our polyclinic №1, the phone number is 98-66-41. The patient should follow the same procedure in other clinics. In general, this procedure is explained to all pregnant women at the “school of young mothers”.
Vasiliy Kovrygin leads me to infant formula dissemination point, located at the first floor at the clinic foyer. Supplier is a Kazakh company. I can read the full name on the invoice: Branch of “Ak-Niet” LLC in Astana. By the way, such dissemination points operate in each of the three Temirtau clinics, as I find out from my interlocutor.
– Everything is now in order, we are supplying the baby food, and the woman receives the infant formula necessary for her baby. And I will find out whether the nurse may have been misinformed, I will work with the doctors – said Vasiliy Ivanovich.
On January 28 we contacted Saule. She could not contain her joy:
– I got a call and was told that the infant formula was in stock. We already have a receipt for 10 packs, free of charge. That’s only for January. They promised to give another 10 packs for February.
We received a fax from the Clinic №1 containing a more detailed response to our queries. The response revealed that the total number of infant formula received by this clinic in 2014, amounted to 95.9% of the applications. There was a note about Saule as well: “Resident of Temirtau had a baby in October 2014. Starting from September there was a disruption in supply of infant formula until 01/26/2014. On January 27, the woman received 10 packs of adapted milk-based infant formula for her child. In the future, those in need of infant formula will receive a regular and full supply of the food. The total number of registered infants, born to HIV-infected mothers, is 5. As of 28.01.2015, all children are provided with an adapted milk-based infant formula.”
Based on this response, it turns out that indeed, the infant formula was not delivered for almost 4 months. During this time, Saule was buying milk substitutes on her own. Incidentally, we have learned the price of a 400-gram pack “Nutrilak” (the ones distributed at the clinic) in Temirtau pharmacies. It turned out they cost from 970 up to 1150 tenge. As experienced moms say, one pack lasts for 3-4 days. As a result, they need 8-10 packs per month. One can easily calculate the substantial amount of money that these mothers have to spend on just baby food.
Let us further study the response from the clinic №1. Free supply of adapted breast milk substitutes are equally provided to infants on various medical indicators, including those born to HIV-infected mothers. When drawing up the forecast volume of the infant formula, which is done in the third quarter of the year for the next calendar year, it is extremely difficult to unambiguously determine the number of children eligible for the provision of free breast milk substitutes. Application-need is drafted, focusing on statistics of past years. Practice shows that the volume of delivery based on the order does not “reach” up to 100% of application needs. In order to provide sufficient free infant formula for everyone, the clinic management believes that every pregnant woman should get registered with a gynecologist in a timely manner – only then the children born to HIV-positive women will be placed on the priority list.
– Apparently there is a need to keep certain amount of breast milk substitutes in reserve by public organizations through funds of sponsors and benefactors – adds Vasiliy Kovrygin. “Within our competence, we, as the clinic’s medical staff, are ready to participate in activities to establish an infant formula reserve together with public organizations. Establishing such a reserve through our business activities is not possible.
A few days later we received an official response from the Department of Health of the Karaganda Oblast. The response revealed that the proposal for provision of medicines, including milk-based infant formula for 2015 was submitted by the polyclinics in November of last year, and the procedures for the procurement of services to provide free baby formula was held in early February of this year by DHKO. Deliveries began in late February after the necessary documents were filed. For a brief period of time prior to issuing the procurement of aforementioned services, a purchase of baby formula was made supplying 2-month needs. Thus, in January-February, the children receive milk substitutes in accordance with the delivery schedule in Temirtau from January 21, 2015.
The official letter pointed out that the application for the purchase of baby food for 2014 was formed in 2013. Despite the introduction of international campaigns to promote breastfeeding the number of bottle-fed children has increased since then; as a result some Medical Pediatric Cabinets (MPC) were running out of stock of formulas earlier. With regard to planning the establishment of a separate baby food reserve specifically for children born to HIV-infected women, it presents a challenge, since there is no list of HIV-infected people in clinics, because the tests are anonymous and strictly confidential. Issuance of breast-milk substitutes is carried out according to the list of absolute and relative indications of the Order of the MoH of RK (786) to all children on the same basis so as to prevent violations of rights of children born to women with tuberculosis, cancer, etc.
The official response further noted that often people with HIV lead antisocial lifestyle that is due to the lack of documents among mothers and children, and this is a serious obstacle to the smooth provision of infant formula, because their prescription is issued only by presenting the child’s PIN.
“Nevertheless, all children born to HIV-infected women in the Karaganda Oblast are provided baby food” the official letter concluded.
We spoke on the phone with Ms. Gulban Mamalinova, Department’s deputy head, who had signed the official letter.
– Why is the tender not completed before February, for example, in December or January?
– In December, we form a committee, and the provision issues are resolved 2 months in advance. Moreover, a partial purchase is made. But the problem we have is that many women either do not want or cannot breastfeed their children.
– I’m talking specifically about children born to HIV-positive mothers. Many women are registered as pregnant, and after birth the infants are immediately placed on the list, so you can easily calculate the number.
– We always approach this issue discretely. If there is a choice, we will, of course, primarily focus our efforts on the child of an HIV-infected woman. We work within frameworks. We are given a certain amount of funds, and we have to meet the budget. I always say, if we were given as much baby food as needed, there would be fewer complaints. But we establish reserves because there is a great deal of migration occurring in the region.
We also had a phone conversation with the chief pediatrician in Karaganda Oblast, Natalia Dyusembaeva, as a result of which the issue of baby food provision became much clearer.
– Free milk-based infant formula is given not just to anyone, but rather according to a list. In dealing with HIV-infected people in AIDS centers, we must ensure anonymity and strict confidentiality. We cannot create a list of these people, in order to prevent their stigmatization, – said Natalia. “Therefore, only after the woman gave birth, the clinic will know that there is such a child. According to the Order №786, we have a common reserve of baby food; we cannot have a separate provision of baby formula for infants born to HIV-infected women. However, since there are few cases of this nature, all these women are fully provided with baby formula. No violation of their rights has occurred in the Karaganda Oblast. They get the baby foodstuff on the same basis as the women with TB and cancer – they are all equal. The number of children on artificial feeding is rising. In addition, inflation is causing the prices of baby formula to go up. Unfortunately, the local budget allocates almost the same amount of funds every year for the past several years – a total of about 1.5 billion. With this money we need to buy infant formula as well as expensive drugs that save the lives of our patients. Drugs to treat serious diseases are very expensive; prices reach 200-300 thousand tenge per bottle. If we do not provide these medicines to our patients, they will die. Allocated funds do not fulfill 100 percent of the needs. As you can see, the budget is quite constrained.
According to Natalia Dyusembaeva, the number of patients who are on the dispensary records eligible for free drugs, is growing. “I called the chief medical officers of Temirtau clinics – she continues, – they said they do not have official lists. Our applications are filed based on the number of children who are bottle-fed, focusing on the figure of the previous year. This is inaccurate. On the other hand, we want to protect people living with HIV – everything is confidential and anonymous. We cannot say to a woman: “You are HIV-positive, therefore, we are putting your name on our list because we are required to give you infant formula.” This is a violation of their rights. We provide the data to the Department of Economics at the regional administration, but there must be a lot of places that need funding as well. We would be happy to provide baby food for everyone who should receive it, but we cannot be blamed for any interruption that occurs. Our administrator constantly tells us that additional funding is needed.”
According to information released by the regional center for the prevention and control of AIDS, a program to stabilize the situation for 2013-2015 has been adopted in Temirtau. The priority is [to take] preventive measures to avoid new cases and to curb [current cases] of HIV/AIDS. Clinical examinations of HIV-infected persons are being conducted together with modern antiretroviral therapy, which reduces the viral load in the blood, thus extending the lives of people with HIV. Local experts are calling for more effective measures: it is necessary to instruct habits of safe conduct in relation to HIV infection and to oblige the managers of industrial enterprises and institutions to provide trainings on HIV prevention in the workplace.
However, it seems no one has thought about the provision of infant formula to HIV-positive women who gave birth. Unable to receive breast-milk substitutes from the pediatrician, not all women can afford to buy baby food on their own. There are different families with different incomes. And it is likely that in a desperate situation with no money to purchase the necessary formula, some mother with HIV will not be able to resist the temptation and end up breastfeeding her baby.
Svetlana Egorova, journalist of Headline.kz, Temirtau, Kazakhstan