The Qazaqstan Halqyna Fund continues its online meetings with Kazakhstani non-governmental organizations (NGOs). Experts from different fields such as health, social sphere, education, culture and sport have suggested a wide range of projects that might be supported by the fund. So far, the fund has held 27 meetings with 628 experts. Health experts have been the most active participants to take part in such discussions.
Treating children with retinoblastoma
While discussing health issues with the Qazaqstan Halqyna Fund some health experts brought up the question of treating children with rare diseases. The More Life social foundation, which is aimed at fundraising to send kids for treatment abroad, suggests using another strategy. The foundation doesn’t want patients to travel abroad but instead wants Kazakhstani doctors to acquire new methods of treatment abroad and implement them locally.
The foundation is partnering with a Swiss clinic where kids with retinoblastoma, an oncology disease of the eyes, can get proper medical treatment. Now, the foundation suggests the Qazaqstan Halqyna Fund pay that clinic to get relevant training for Kazakhstani health workers in order to bring this technology to our country. So far, Kazakhstan, Russia, Turkey and many other countries use radiation therapy to treat such patients. However, even after a course of such a treatment patients may lose their sight. According to the More Life, Swiss specialists have found a way to cure retinoblastoma and preserve eyesight.
The More Life says that in the end this would save a lot of money for the country. Currently, a full course of treatment for one kid costs $67,600 including visa and air tickets.
Expensive genome diagnosis for butterfly children
Professor Rysuly Mustafa has brought up an idea to help children with epidermolysis bullosa hereditaria. Young patients with this rare disease are often called butterfly children.
«They need direct help because the treatment of this tough disease requires a lot of money. Moreover, we have no genome diagnosis here in Kazakhstan. I mean we can diagnose the disease itself but we can’t say what genes are affected and how we can treat them. This is a big problem,» he said.
Dr. Mustafa noted that there are only two up-to-date medical centers in Austria and Australia that specialize in the diagnosis and treatment of epidermolysis bullosa.
«These methods are sophisticated and expensive. I believe that the fund is capable to send at least some of our children to those centers for a course of treatment,» he said.
According to the professor, there are 108 children diagnosed with this disease in Kazakhstan.
Support for parents of kids with autism
The Sana Sezim public fund that provides help for parents of children with autism and other developmental conditions, suggests the Qazaqstan Halqyna Fund support these families.
«These families need psychological support and some kind of social adaption. Even though we are trying to build an inclusive society, families with disabled children do not feel that support and understanding yet,» said Bakhtygul Akhmetzhanova, head of Sana Sezim.
Activists from the region of Ulytau have also supported the idea of assistance to children with autism and their parents. There are no rehabilitation centers for such children in villages and small towns all over the region. Many parents travel to the capital city of Nur-Sultan, Almaty or other cities for rehabilitation of their kids. They also have to pay for accommodations in hotels. Therefore, activists ask the fund to support the opening of such rehabilitation centers in remote areas. Volunteers are ready to donate their time searching for proper buildings, specialists and psychologists.
Expanding access to in vitro fertilization (IVF) for Kazakhstani families
Senator Ms. Lyazzat Kaltayeva took part in one of the fund’s discussions where she raised the issue of reproductive health in Kazakhstan. As she noted, many families need IVF but the government can’t cover every application.
Many people can’t get a quota for IVF, their number is limited. We have big problems with reproductive disabilities of both women and men. Many families who want to try IVF have no money for that expensive procedure and they often can’t get a quota,” said the senator.
Even those who successfully obtained that quota get no results because sometimes they need more than one procedure.
«In order to get an in vitro fertilization, loads of analyses are required. They are quite expensive. Proper therapy is needed as well. All of this is a big burden for families whose only desire is to have a baby. Unfortunately, many couples give up and stop trying because of a lack of financial resources. Even a quota doesn’t help to solve the problem. This is one of the most pressing issues for now,» the official said.
Elmira Aliyaeva, a member of the Qazaqstan Halqyna Fund’s guardian board, who also moderates online discussions with experts, says that NGOs from the healthcare sphere are the most active participants of such meetings via Zoom.
«This is an ambitious, complicated task since our help is crucial for both children and adults with special needs. We need medicine for the treatment of rare diseases, we need diagnostics and we need to solve a set of systemic issues. That is the reason NGOs from the healthcare sphere are so active,» Aliyeva said. She also noted that no decisions are made during these online discussions. Experts from different NGOs and other organizations just share their ideas with the Qazaqstan Halqyna Fund, which is going to update the whole concept of its work.
In order to make sure that they are hearing even the quietest voices from the civil society, the fund has organized a series of online discussions with NGOs. It is expected that these entities will help the fund identify crucial social projects that desperately need financial resources to be implemented.
