Expanding access to special medical foods for patients is unlikely to happen by the end of the year, and the necessary funds will be sought from the fund’s budget for 2024, according to a response from the National Health Insurance Fund (NHIF) to Medical News.
Recall that at the end of 2022, the National Network for Children, the association “Bridges Community,” doctors, parents, and civic organizations joined forces to take a position that urgent action is needed to expand access to foods for special medical purposes for both children and adults in need. In medicine, malnutrition due to illness is known as malnutrition. The problem is that currently, many medical foods are not covered by the National Health Insurance Fund – these are foods for enteral application, for rare diseases treated at home, and others. As a result, hundreds of people are forced to pay for them themselves, and often, due to their high cost, they rely on donations to obtain the vital medical food they need.
As a result of the decision to postpone the expansion of access to medical foods for patients, we are publishing the full text of Antoaneta Ivanova’s comment – an activist, volunteer, and advocate for the causes of children and people with disabilities, a member of the Board of Directors of the National Network for Children, and a member of the Board of Directors of the Spina Bifida and Hydrocephalus Association – Bulgaria. She is a participant in both informal working groups on the topic of foods and in the official working group at the Ministry of Health last year.
“In recent days, we have become acquainted with the information that is in response to a journalistic inquiry that “NHIF will postpone the expansion of access to foods for patients because it collects data.”
A little information about the foods – they are needed by children and patients with various illnesses who cannot tolerate the food that is typical for others. The conditions are different, sometimes requiring the use of special foods for a short time, sometimes for a lifetime. The number of these children and patients is not particularly large, but the foods are expensive.”
Currently, dietary foods for special medical purposes for home treatment, including enteral application foods, as well as some foods for rare diseases, are not covered by the National Health Insurance Fund (NHIF) for all conditions.
This puts hundreds of people in a situation where they rely solely on their own or donated funds to obtain the vital medical food they need for their children and loved ones. The problems have been present for years, and there have been no results from the signals and requests submitted so far.
The National Network for Children, the “Bridges Community” association, doctors, parents, and civic organizations advocated for urgent action last year regarding access to foods for special medical purposes for children and adults in need.
During the course of two consecutive governments in 2022, the National Network for Children participated in working groups created at the insistence of the network and demanded that the Ministry of Health implement a series of measures to ensure access to medical foods for children and adults. The proposed solutions were sent to the institutions in an open letter for urgent measures to access medical foods.
Among the main problems causing patients to be without medical food are the large number of diagnoses that result in an inability to consume food in the usual way (leading to malnutrition), the lack of codes in the disease registry, and the need to update the list of dietary foods for special medical purposes fully or partially covered by the NHIF. Even for the diseases approved in the list, there is currently a lack of liquid form of foods, which is the most suitable for use for some conditions and is often recommended by gastroenterologists.
Caring for patients’ nutrition is a fundamental human right, and this right has been confirmed by the International Declaration adopted by international societies for clinical nutrition and metabolism (ESPEN, ASPEN, FELANPE, PENSA) – organizations with thousands of members worldwide – in 2022. The European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and the Chairman of the Nutrition Committee of the German Society for Pediatric and Adolescent Medicine also supported patients’ rights with letters to the Ministry of Health in August 2022.
The position of the Bulgarian Society for Pediatric Gastroenterology, Hepatology, and Nutrition strongly states that the implementation of enteral foods actually significantly reduces healthcare costs for the care of children because their timely and proper use prevents complications in patients who require them. Often, patients are admitted to healthcare facilities solely to be fed, as the foods they need are provided through the clinical pathway but not for home treatment.
At the moment, there is a possibility for some conditions to receive funds through the Pediatric Treatment Department, but this is not a systematic solution and is not available to all patients. It requires gathering documentation, and the decisions are limited to a certain period of time.
Currently, the National Health Insurance Fund (NHIF) only reimburses home-use medical foods for a few conditions. Opinions from five expert councils affiliated with the Ministry of Health indicate that patients with over 100 other conditions have no access to such assistance, and it is recommended that they be added to the NHIF list for reimbursable dietary foods for special medical purposes for home treatment.
Information from the Ministry of Health’s working group has been submitted to the NHIF as early as December 2022, but no actions have been taken so far to update and supplement the list of conditions for which the NHIF reimburses home-use medical foods.
The NHIF Supervisory Board is the authority with administrative power and mechanisms to provide food to patients by implementing the procedure for updating the lists of conditions and foods. Despite having sufficient information for a significant portion of those in need for several months now, the NHIF and the Supervisory Board have taken no action!
While the network’s team is working towards a systemic solution, campaigns by the National Network for Children (NNC) in partnership with businesses and individual donors have provided medical foods worth over 16,000 BGN for children and adolescents.
Allow me to share a story about one of the children we support with donations for feeding supplies for their stoma, which are also not covered by the NHIF. This child, who lives an active life, attends school, and receives periodic supplies from the Pediatric Treatment Department, will soon reach an age where their food supply will permanently stop. The mother passed away a few days ago. She couldn’t wait for the changes she had hoped for. The child feels embarrassed when campaigns are announced to raise money for their food! Currently, volunteers and activists are wondering how they will take care of the child! The question of how those in need will be fed weighs on them every day!
Other children in need are babies, premature infants, and those with various conditions – congenital, postoperative, etc. Many of them stay in hospitals separated from their parents simply because they don’t have access to home-use medical foods!
As a network, we are ready to help children and parents again when we have donor funds, but it must be made clear that civil organizations, donors, and volunteers cannot perform the duties of the institutions!
The responsibility for the lives and health of children and all patients in need of food lies with the NHIF, the NHIF Supervisory Board, and the Ministry of Health!
These institutions have the obligations and authority to make the necessary changes, add diagnoses, codes, and types of foods to ensure that patients receive the foods that treat and save them!
The successive months without any actions to improve access to food are a cruel mockery of children, parents, and patients! We are already considering seeking legal accountability for the inaction in order to protect the rights of children and patients!
Our recommendations for a permanent solution to the problem have been developed through the collaborative efforts of experts, doctors, and like-minded individuals:
- To add malnutrition codes as primary or additional codes to the list of conditions for which the NHIF reimburses special medical purpose dietary foods for home treatment – according to ICD-10, these are codes E43, E44, and E46. Some of the conditions that lead to secondary conditions requiring the use of medical foods are rare, and it is not efficient to go through the administrative procedure of adding each of these conditions with separate codes to cover the needs of a few patient.
- To update the List of dietary foods for special medical purposes, fully or partially reimbursed by the NHIF. This list should include malnutrition codes, and corresponding types of medical foods should be prescribed based on the specific physiological needs of the patient, including powdered and liquid forms, with subtypes covering all age groups.
- To prepare a financial calculation based on the number of patients in need of these foods.
- To initiate negotiations with manufacturers for the supply of medical foods, including liquid forms, according to the updated list, at the earliest opportunity.
- To start establishing a registry of patients in Bulgaria who require dietary foods for special medical purposes.