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Dreptul la sănătate în diabet: Raport de alternativă EPU către Consiliul ONU pentru Drepturile Omului

Doar 9 la sută din cele 15 mii de persoane dependente de insulină din Moldova au acces la analogi de insulină (tratament de primă alegere în diabetul de tip 1), pe lângă 70% asumate de Programul Național de Diabet 2011-2015. La fel, au fost estimați 10% dintre pacienți care beneficiază de educație terapeutică (cursuri de Școală a Dianetului) în loc de 70% asumate de același program. Acestea sunt unele dintre concluziile Raportului de alternativă asupra Dreptului la Sănătate în Diabet, elaborat de către Asociația Tinerilor cu Diabet din Moldova DIA și depus către Consiliul ONU privind Drepturile Omului pentru cea de-a 26-ea sesiune de revizuire a Republicii Moldova în cadrul Evaluării Periodice Universale (EPU).

La 30 mai documentul a fost prezentat în cadrul unei conferințe naționale, în prezența reprezentanților misiunilor diplomatice în țara noastră și a societății civile. Cele mai mari provocări cu care se confruntă aceste persoane s-au axat pe accesul la pachetul de îngrijire în diabet conform standardelor de tratament: medicație adecvată (analogi de insulină), educație terapeutică, teste de monitorizare a glicemiei, asistență în dializă.

Raportul poate fi accesat aici:  (link fișier) file:///C:/Users/User/Downloads/DIA_UPR26_MDA_E_Main.pdf

Alternative submission to the 26th UN Human Rights Council session on the UNIVERSAL PERIODIC REVIEW of the Republic of Moldova (2016)

The Submitting Stakeholder

  1. This report is submitted by the DIA Association of Young People Living with Diabetes, which is a nonprofit organization acting to improve the type 1 diabetes people welfare. The DIA Association promotes diabetes health care standards nationwide by support to live healthy lives in taking responsibility for selfcare and advocatesthe right to qualitative and available diabetes medication, education, devices and services.

The issue to be addressed: Right to health of people with diabetes

  1. There are several areas in which Moldova fails to deliver on its human rights obligations in the field of health of people with diabetes. While these issues are not exhaustive, this paper focuses on the following concerns which require urgent action as highlighted by the persons most affected by these rights violations.

Background

  1. Provision of diabetes education, medication, strips for blood sugar control and health care providers are all highly important parts of the health care package for diabetes people, according to the international diabetes guidelines. As one of the four major non-communicable diseases (NCD), the diabetes epidemic doubles the number of patients each decade: 36.646 – in 2003, 67.000 – in 2012, 83 884 – in 2014. This chronic and incurable disease is responsible for about 400 deaths annually and limits many lives with life-threatening complications for over 84000 patients annually in Moldova.
  2. The right to adequate medication
  3. There are no universal access to insulin analogues for children, young, pregnant women and patients with diabetes complications. Only 9% of insulin-dependent patients have access to insulin analogues, while the state has committed the 70 percent ratio according to the 2011-2015 National Diabetes Program. Only 1350 patients receive these essential drugs of total about 15.000 patients in 2015 and 14.308 – in 2014.
  4. This includes 80% of children with type 1 diabetes (312 of total 390), adults with type 2 diabetes, missing the priority for young adults with type 1 diabetes, including pregnant women (estimated over 8000 persons).
  5. Because of poor management, the insulin-analogues crisis happens and the patients are forced to buy them, given that Moldova is the poorest country in Europe. So, the insurance budget for the insulin analogues in the period 2013-2015 was 17.2 million MDL and in 2016 – 21.2 million MDL. On the one hand it shows an increase of 23.2%, but on the other hand, if superpose with 60.9% of the MDL depreciation, that indicates a number decrease of the patients provided with insulin analogues.
  6. 2. Unavailable insulin injection devices
  7. There is no access to serings, pens, pumps, needles, lancets for over 14 thousands diabetes insulin-dependent patients. Only children could receive 200 pen’s needles annually.
  8. There is no access to insulin pumps and CGM systems. The National Diabetes Program does not provide and the patients are purchasing from neighboring countries. Only 2% of children with diabetes allow this luxury. Thus, there are 120 cases of ketoacidosis or hypoglycemic comas in diabetic children annually.
  9. No provision to funding strips for blood glucose monitoring
  10. The young people with diabetes, including, the pregnant women are not provided with glucose test strips. According to the National Diabetes Program, 70% of children with diabetes should to be assured with glucometers and strips. The children with diabetes were provided with glucometers but with only 25 blood sugar strips, while international guidelines recommend at least 3-4 measurements per day in the insulin intensive treatment.

4.Lack of structured diabetes education

10.In Moldova there are no National Standards on Diabetes Education for health care professionals and patients. According to the same National Diabetes Program, 80% of patients with diabetes had to be included in the diabetes education trainings. There are no statistical data on trained patients; also the general practitioners do not practice the structured diabetes education. There is one public primary health care center that practices diabetes education courses and some private ones.

5.Lack of  qualitative data, only non-unified quantitative data

11.There are no unified statistical data regarding people living with diabetes in Moldova.  Therefore, the public health care program is not based on real needs (qualitative data) in a National Diabetes Register, while the scales of programs and the number of beneficiaries casts doubts on their sufficiency, adequacy and effectiveness. The real number of diabetes and pre-diabetes people is estimated to be 3,7 times bigger, which means that over 309 thousands of people are not receiving any access to necessary health care.

6.No adequate diabetes emergency health care services

12.There are difficulties in accessing diabetes emergency health care. Only three Endocrinology departments are accessible for adults (Balti region, Chisinau region and one for all the country) from five, two others – for public employees and one – for children with diabetes. Only 24 beds are available for over 20.420 patients with diabetes, including 3.733 insulin- dependent, from Chisinau region at the „Sfinta Treime” Municipal Hospital, in medical emergencies.

7.Lack of diabetes pregnancy health care services

13.The number of pregnant women with pre-existing diabetes is increasing, mainly from an increase in type 2 diabetes (over 5.000 per year), but also an increase in insulin-dependent diabetes (over 500 per year). Despite this, the number of averts is high. There are only 50 estimated diabetes delivery per year, because of lack of adequate prenatal care infrastructure (center or department) and trained professionals (endocrinologist, obstetrician, neonatologist, registered dietitian, diabetes educator).

14.Approximately 87.5% of pregnancies complicated by diabetes are estimated to be due to gestational diabetes (which may or may not resolve after pregnancy), with 7.5% being due to type 1 diabetes and the remaining 5% being due to type 2 diabetes.

15.The pregnant women are not included as criteria for provision on insulin cartridges and insulin analogue, even if the insulin analogues serve as first-choice drug for blood sugar control during pregnancy. Also the insulin pumps are not assured for them.

8.Unavailable access to kidney failure treatment for diabetes people

16.Unacceptable long waiting lists, the lack of transparent criteria and financing, the corruption are the main causes of poor access to kidney failure treatment (dialysis, kidney transplant) for diabetes people. The diabetes life expectancy in Moldova is lower. For diabetes type 1 is estimated 30-40 years less, and 20 years lower in diabetes type 2, compared with the European diabetes life expectancy average – 10 years shorter in type 2 and reduced by 20 years in type 1 diabetes.

17.Eight Hemodialysis departments from Moldova provides services to only 59.8% of patients (718). Estimates, only 3-5% of dialysis patients have diabetes, while clinical estimates show that 10-40% (30% of patients with type 1 diabetes and 10-40% of diabetes type 2 develop kidney failure) of the dialysis needs refers to diabetes mellitus. Geographically the dialysis centers are not homogeneous localized and is concentrated in the capital city: 5 – in Chisinau, 1 – Balti, 1 – Cahul, 1- Comrat. Also, only two centers operates under public-private partnership.

18.There are 80 functional hemodialysis machines in the country hospitals, while it takes 200. Over 1200 people need dialysis. The deaths number related to diabetes vital complications exceeds 370 cases annually and a quarter refers to  type 1 diabetes. The diabetes type 1 deaths doubled in 2014 (31- in 2012, 64 – in 2013, 124 – in 2014).

19.The number of patients with kidney failure from the waiting list and the criteria to access this service are not transparent. Lack of funding has created confusion in access to this quality procedure. Until 2015 patients were differentiated according to the category of service: erythropoietin including (twice expensive) and without this. In 2016 a hemodialysis session costs 1,600 MDL. At least 95% of juvenile onset diabetes (over hundred deaths annually) had no access to dialysis, especially, in 2008-2015. Even if the peritoneal dialysis is an alternative treatment for patients with diabetes, it is not applied in Moldova.

20.In Moldova there are estimated 500 patients who need kidney transplant, but only 41 are included in the waiting list. No diabetes patient didn’t benefit of kidney transplant in Moldova, at the same time there is good practice in Romania in this area.

Recommendations for decision makers

  1. Draft and approve the 2016-2020 National Diabetes Program according to patients’ real needs, clear objectives and indicators, effective financial resource planning as set out in Romania.
  2. Creation of the National Diabetes Register;
  3. Approve the National Diabetes Education Standards for health care professionals and patients;
  1. Increase the insulin analogues access to real 70 percent ratio for children, young, pregnant women and long-term complicated diabetes;
  1. Increase the access to the blood sugar strips for children, young, pregnant women and long-term complicated diabetes people;
  2. New National Diabetes Program’s aim regarding the insulin pumps providing to diabetes children, young people, pregnant women, including through the public-private partnership projects (ie. Rent pump during pregnancy and supplies ensuring);
  3. Transfer the Global Diabetes Guidelines provisions into National Diabetes Clinical Guidelines and update every two years;
  4. Transparency and equity (clear criteria) to managing the dialysis and kidney transplantation waiting list, including for people with diabetes; Homogeneous location of the dialysis centres. Applying the peritoneal dialysis and home haemodialysis as alternatives to dialysis centre, in order to streamline the flow of old patients