Georgia's First Lady talks about disease, politics and damage control on World TB Day
Sandra Roelofs is many things to many people – she's a mother, wife, nurse, former delegate for the ICRC and a vocal health advocate on a range of issues from social work to prisons. She also happens to be married to the Georgian President, Mikheil Saakashvili. As the ICRC prepares to hand over its tuberculosis-related activities in Georgian prisons to the authorities on 24 March, the country's First Lady explains why TB is a disease that everyone should be worried about and her hopes for eradicating it.
A lot of people believe that TB is a disease of the past or that it only targets the poor and the sick. Are these perceptions accurate?
TB is a bacteria that doesn’t rest or discriminate. It’s returning to some of our European cities… London, Paris and other places around the globe.
This is a public health issue. TB is an airborne infection that can affect people at anytime. Some groups, such as those living with HIV and people who have weakened immune systems, are more susceptible to it, but anyone can get it.
It's in our own interest to defend and protect those populations that are at highest risk. This means immigrants, people suffering from other diseases or those living in over-crowded or badly ventilated areas, including prisons. It also means overcoming the stigma associated with TB.
I've met people who are afraid to tell their own family members they have it and I find such attitudes really eye opening. Other people I talk to think it's something you automatically die from or that it's forever… but it can be cured if people are properly diagnosed, get the right medic ine and importantly, finish their treatment.
Many TB patients say that beyond the tablets, white coats and x-rays, what really makes a difference to their recovery is knowing someone cares and having people around who encourage them to eat a healthy diet and stay on their drugs. The Georgian Red Cross Society is hoping to expand its social work in this area but surely there must be a need to expand similar initiatives for TB sufferers?
Absolutely. Social support is one of the key things TB-infected patients need most when released from the hospital. Unfortunately, social workers aren't held in very high esteem in Georgia. People want to become doctors or surgeons. It's not that popular to become a nurse or a social worker.
I'd love to see this mentality change because social support and adherence counseling can make a tremendous difference in how people cope with their treatment and whether they become cured. It's life-saving work, as far as I'm concerned.
You mentioned places of detention. How do you tackle TB in prisons, which are, by nature, places where people live close together and contagious diseases often spread more easily?
We have been very grateful to the ICRC over the past decade for the great job they've done in our prisons, taking care of detainees with classic TB and now also multi-drug resistant TB, or MDR-TB.
As you say, it's hard to deal with this problem in jails. Pre-detention conditions are not always ideal. Detainees don't live in easy circumstances and in addition, there can be psychological issues. In exceptional cases, prisoners will intentionally try to catch TB because they want to be taken to hospital, where they will have more space and their relatives can come to visit. It's crazy to think someone would want to catch a deadly disease on purpose but sometimes it happens.
What we try to do on a daily basis is make sure people are aware of health risks. We have very good staff in our prisons and thanks to the support of the ICRC, thousands of detainees have been screened and treated for TB, saving many lives. Now that the ICRC's activities are being handed over to the Georgian authorities, we'll do our best to continue with this work. We’re also in the process of building some new prisons so there will be better conditions in the future. I’m not saying it’s ideal at the moment.
How we help prisoners when they are released is also very important. Those who are infected with TB need to continue with their directly observed treatment at hospitals or polyclinics. Ex-detainees face the double challenge of trying to rebuild their lives and get better. They won't have participated in community life for many months or years and very often don’t know where they’re going to live. So, it can be hard to follow-up or convince them to stick with their medication even when they start to feel better. If they don't, they can get sick again and the bacteria will grow stronger. Helping people make the transition from the prison health system to the civilian system is a big challenge in Georgia.
Patients who are taking medication for drug-resistant TB must take a powerful cocktail of pills, injections and powders for around two years. What's it like for them?
Treatment for multi and extremely drug resistant TB is very heavy. The drugs can be quite painful and sometimes new patients don't want to start the treatment when they see what fellow sufferers are going through. I personally saw several p atients in the hospice where I was working who didn’t want to start MDR-TB treatment because they heard it had such bad effects.
It's up to the health community to inform patients fully so they know what to expect. Drug-resistant TB requires a two-year treatment but the first six months are really the worst. After that, people generally start to feel better and can go home and begin to feel " normal " again. But they have to be careful not to be lulled into a false sense of recovery. Just because they feel better, doesn't mean they are cured. That requires doing the full course of treatment.
People who know you only as the First Lady of Georgia might wonder why you are speaking out on World TB Day. Why are you so deeply committed to public health issues?
I became head of Georgia's Country Coordinating Mechanism for AIDS, tuberculosis and malaria five years ago, following my time as an ICRC delegate. Every country that benefits from support from the Global Fund must have such a mechanism in place. The CCM, as it's called, includes representatives from the private and public sectors and we develop and submit grant proposals to the Global Fund based on the needs here in Georgia. Over the years, our role has expanded to cover other diseases, such as hepatitis. We monitor progress and coordinate projects to fight infectious illnesses.
I've developed a similar mechanism for reproductive health care, which deals with motherhood and health issues for children under five.
Working to meet the Millennium Development Goals is my main focus. This means fighting disease, reducing maternal and infant mortality, and lowering the level of extreme poverty. Four out of eight of these goals deals with health, and most of the letters I receive from Georgian citizens are about ac cess to care and insurance, and the stigma related to certain infections. So that's why medical issues matter to me.
Two years ago, I also became a registered nurse because I wanted to understand the health system and its management from the inside. This has helped me gain a better comprehension of the challenges Georgians face living in a country that's in transition and to get a clearer picture of the weak points and missing links. I'd like to see improvements in health management, insurance-based care and more social work.
At the end of the day, people need to have access to medicine, be able to afford it and continue to take it. This is especially true for TB.
What challenges do you see in reaching the Millennium Development Goals with respect to TB?
The main thing is for governments to recognize they have a problem. Governments playing for politics alone don't like to say, for instance, that TB is an issue in their country. Another challenge comes from countries that side-step drug approval committees in favour of using their own local alternatives because these drugs are cheap, accessible and easy. Standards need to be respected and governments need to care more about the fate of their patients and the efficiency of the medication they offer than about the political gain in saying they provide 100 per cent coverage for their TB patients. TB doesn't stop at borders so there are consequences for other nations when some countries are too proud to say they have a problem or don't want to provide responsible care.
Another challenge is that primary health care doesn't always include TB treatment. Here in Eastern Europe, this is a legacy of the Soviet Union, where different diseases were covered by different doctors. People still self-diagnose o r go to a particular specialist without consulting their general practitioner. There's also a lot of self-medication and a lack of prescriptions. GPs also need to be well-informed about TB. If the disease was integrated into primary health care, I think we would detect much more of it and avoid misdiagnosis. In every region and village, there should be enough knowledge and resources to screen the population.
Do you think your involvement and passion for health care and TB have helped put these issues higher on the political and national agenda of your husband, President Mikheil Saakashvili?
Yes, definitely in the past five years. Of course we have a big financial incentive, which is the Global Fund and other donors who put serious money into grants. The government’s commitment is steadily growing, also when it comes to HIV/AIDS.
I'd like to think that my personal involvement has helped raise the visibility of the problem of TB. We now have good medical centres and very committed people, and we're showing better detection and treatment rates. We're taking charge of the MDR-TB problem and we're even dealing with it in prisons, thanks in part to the ICRC. I think the fact that we're playing a positive role in the region in these respects reflects a strong political commitment and desire to put more money, not less, into these issues.
It’s not impossible that we could someday soon develop a vaccine against TB or the most dangerous strains, so I feel we should really put money into research as well. Eastern Europe would be a great market to include in research because the salaries are still low, yet the theoretical knowledge is quite high.
I'd love to see a vaccine developed within the next decade to 15 years but until then, we've got to limit the damage this disease is wreaking on people's lives and health, and make sure as many patients as possible survive, don’t spread it and don't get it again.