Life after Cancer? In Bulgaria?
Is is not an easy subject. Cancer. I hate to even write the word. A group of Bulgarian women however have faced up to the fear and stigma of the disease, raising a voice that overcomes politicians’ clamor and makes Bulgaria a full member of the global cancer awareness campaign.
The Darkest of Times
My father, one of 300,000 ill-fated Bulgarians diagnosed with cancer, waged the toughest battle of his life - the battle against the disease - only to lose it two years ago. Now I see my mother going through all this and me, again, trying to help the best I can.
It was only until recently that all I could blame for the suffering was crossed stars and karma. Now that I am forced to go through this nightmare again with my other parent, it is becoming more and more clear that life could have been worth living again was it not for a doctor's oversight, lack of funding or I-don't-give-a-damn attitude.
After years of lumbering reforms in Bulgaria's health care system, cancer patients and their families feel abandoned in their struggle to come to terms with the illness, both in terms of treatment and emotional support.
Remember the insolent statement of Mr Atanas Shterev a few years ago? A former deputy chair of the parliamentary health care commission, he made front-page headlines by advising against the allocation of additional funds for cancer sufferers, who, in his words, were doomed.
To top it all off, Shterev felt so much insulted that he said he would appeal the fine of BGN 500 that the Commission for Protection from Discrimination imposed on him!
So it was small wonder that the response to the official's cheeky attitude was an anonymous letter of a woman, who claimed to be a mother of a sick girl, reading: "I want to kill you and then serve my sentence in jail."
Unlike other European countries, whose health care systems do their best to fund extra services to support these people and their relatives through the darkest of times, those who have been diagnosed with cancer in Bulgaria have been facing a shortage of life-saving medicines and lack of the support they need to cope with the emotional turmoil of the illness.
Luckily there seems to be now a light at the end of the tunnel.
Beating the Odds
A group of women are pedaling up the street, braving the cold October day. Their aim – to answer the doubters and show there is life after the deadly diagnose “cancer”. And they succeed - most of the journalists here do not even understand these are bone cancer sufferers.
The event is one of many that the Bulgarian Cancer Patients Association has organized to find ways to improve access to care, ease suffering and end the stigma preventing many patients from getting treatment and integration.
"What we are trying to do is project the message that there is hope after cancer and to show women who have returned to their families and careers," says Evgeniya Adarska, chair of the association and one of the most energetic activists in Bulgaria for cancer awareness. “We try to give each patient the support or help that he or she has been looking for.”
Zheni, as many people who come to the association office call her, spends a surprising amount of time in private meetings with cancer suffers, accommodating those from the countryside, sending out private messages of support. It is like a family here and she, a cancer survivor herself, can relate to what cancer patients are going through.
"It may take four minutes or four hours of your day, but the impact on the other end is huge. This gives us the strength to go on,” she says.
Encouragement and self-confidence that the disease has not shattered their lives completely. This is what patients receive from the association, be it though private meetings, talks on the green telephone line or messages on the Internet.
“We try to do our best even though each case is individual and people often find it hard to talk about the disease,” says Evegniya.
Ending the Stigma
Data shows that Western Europe is making a huge progress in coping with the problem, while the chasm in Eastern Europe remains. Why?
Funding, of course, most of the readers would be quick to retort. Ability to talk about the issue openly makes a big difference, the campaigners say, claiming that the social factor is even more important than the economic issue.
I remember an American woman, who allowed her hair to be cut by her 4-year-old daughter, as she was going to lose her hair anyway during chemotherapy. Not only was she worried about her own prognosis, but she was afraid of her daughter's reaction to the news. And she found a great way of alleviating the terrifying task of telling her daughter Mommy has cancer.
A number of cultural and social factors have prevented Bulgarians to talk about illness or body or approach the issue openly. Thousands of parents face the same dilemma of that American woman, but rarely come up with original ideas. Anger, pity and shame are the most common feelings.
“Bulgaria’s society has no traditions in this field, we are often too proud and self-willed to adopt the successful practices of other countries,” says Evgeniya.
Yet according to Evgeniya the trend of negative and escapist attitude has been changing and that makes a huge difference. The chasm between doctors and patients, however, is widening.
Doctors vs Patients
With beauty therapy among the huge range of cures on offer for cancer patients abroad, a light in the tunnel of Bulgaria's problem-ridden and facilities-short health system seem to be only its doctors. The relations between cancer patients and doctors, however, have been strained.
This is the general conclusion of a survey the Bulgarian Cancer Patients Association has just wrapped up. The survey aims to reveal the truth about the relations between doctors and cancer patients and find ways to improve it. The results from the survey, conducted by the Psychology and Health Center, will be announced on Thursday, October 28.
“The first clash of the patient with the dreaded system is in the hospital,” Evgeniya says and adds that the media is also responsible for presenting the state only as a cruel step mother in its care for the cancer sufferers.
“When I was sick I am not sure I would have survived if I listened all day long on the TV and the radio about Bulgaria’s genocide against cancer patients. I am absolutely honest about that.”
She remembers it was a long way to go from meeting her doctor to developing a close and honest relationship with her.
“It was only after I did that that I felt how important this has been. The truth is that doctors and patients should talk openly and honestly.”
The Politics of Cancer
“I am extremely glad that finally there is political will for finding a solution to our problem.”
These are words of Teodora Zaharieva, the best-known cancer survivor in the country, after her meeting with the recently elected Prime Minister Boyko Borisov. According to her the issue of medication shortage can be solved within months.
Fears that the rope around cancer-sufferers’ neck will be tightened even further accompanied the elections of the new government this summer. The messages that the center-right cabinet of GERB party has been emitting so far, however, are more than encouraging.
“It is very important to say that the access to medication has been eased. We try to keep our finger on the pulse of public life. The influence and recognition we have received gives us strength, but also great responsibility, which we are prepared to bear,“ says Evgeniya.
As the intermediary between the patients and the decision-makers, the association has received the recognition of the Heath Ministry and has managed to push through amendments to the health insurance law.
“This is the first time that Bulgarian patients get the status of participants in the public life. This is the first time that Bulgarian patients get a quota on the body that decides the policy of the National Health Insurance Fund, a key factor in the country’s health policy being the one who pays for health services,” Evgeniya says.
The association is also behind last year’s extension of the reimbursement list, adding to it five high-technology formulas, the best and latest medication on a global scale, setting a precedent in Bulgaria’s health care history.
Still it is not uncommon for patients to find themselves in a Russian roulette kind of game – they are forced to change their medication with less useful and more destructive for their body drugs because of chronic shortages.
Teodora Zaharieva was the first to win a trial in court against the Health Ministry three years ago for interrupting her treatment due to lack of medication, after which her condition deteriorated. Should all cancer sufferers turn to court? Is it ethical to force these people to wage two battles – with cancer and with the administration?
The treatment of Bulgarian cancer patients is exclusively an obligation of the state, but it is also a fact that Bulgaria is the only European country, whose biggest hospitals do not have a foundation affiliated to them to help financially in times of austerity.
Estimates of patients and doctors show that at least BGN 300 M per year is needed to cover the costs for cancer medication in Bulgaria. Now the allocated money stand at BGN 90 M, while six years ago it was bare BGN 50 M.
“Oncology is more successful, but it is also more expensive than ever,” Evgeniya says.
A national anti-cancer plan may partly solve these problems. Its draft, which aims to streamline prevention measures, deliver treatment more promptly, dramatically cut cancer deaths and improve the lives of survivors, tops the agenda of the Bulgarian Cancer Patients Association. The plan has been modeled on Scotland’s cancer plan and has already been sent to the prime minister
This is a plan, which will bring together and systematize all suggestions and proposals in a health policy, which Evgeniya says, now resemble “gunshots into the air during a Macedonian wedding”.
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