According to her, the combination of hepatitis B and D is an extremely dangerous problem that is not sufficiently recognized in the country. "We face a lack of accurate information and a unified accounting database, which complicates the assessment of the situation. There is also a shortage of specialized assistance and support from medical institutions," she noted.
The woman spoke about her experience with interferon therapy, which yielded no results: "I underwent three treatment courses, and each time I experienced a relapse. The side effects worsen my quality of life: high fever, muscle aches, constant fatigue. Meanwhile, I need to work and earn money for treatment," she added.
The symptoms of hepatitis D, according to her, significantly deteriorate life:
- Asthenic syndrome: constant fatigue, weakness, and a sharp decrease in endurance.
- Sleep disturbances: insomnia at night and constant drowsiness during the day.
- Depression: not only a psychological state but also a consequence of neurotransmitter disorders.
- Digestive problems: pain in the right hypochondrium and persistent nausea.
- Liver damage: skin itching and jaundice.
- Portal hypertension: risk of bleeding due to low platelet levels.
- Ascites: fluid accumulation in the abdominal cavity, which can occur for years.
The woman also mentioned treatment with the modern drug bulevirtide, which, while helpful, does not provide a complete cure. To purchase it, she had to sell her house and work for three years without weekends. The total cost of treatment was about $68,000.
"Hepatitis B and D is not just a diagnosis. It is a daily struggle for quality of life," the patient noted.
Difficulties Faced by Loved Ones
Urnisa Erkebaeva, chairperson of the Public Organization "Stop Hepatitis KZ," shared her feelings: "It is very hard to see people suffering from hepatitis every day." She lost her mother to this disease, which motivated her to help patients. Although Urnisa herself is not ill, she is well aware of the problems faced by patients.The organization serves as a link between patients and government structures. "We convey patients' requests, solve problems, but we do not always succeed in making treatment accessible," she said.
According to her, it is necessary to establish negotiations with drug manufacturers to lower prices. "Some patients are willing to co-pay if the government can find donors and reduce the price," she added.
"We prioritize safety and effectiveness. It is hard to see people fading away every day, especially when there is nothing we can do to help," Urnisa said.She also provided an example: "In one family, four brothers have hepatitis. Three of them have complicated cases. The problem is that a liver transplant requires significant financial resources."
The situation with vaccination against hepatitis B has improved; however, the danger of hepatitis D remains relevant. "We have young people who have already been diagnosed with this disease," Erkebaeva noted.
What Do Patients Need?
- Early diagnosis.
- Access to modern treatment methods.
- Clear information about the disease.
- Real support.
They need WHO to develop recommendations for hepatitis D, and for governments to create patient registries and ensure funding for treatment.
Photo on the main page is illustrative: suara.com, thesun.co.uk, involta.media, medaboutme.ru.
