ADDRESS TO THE MEMBERS OF BOTH HOUSES OF PARLIAMENT ON THE OCCASION OF WORLD AIDS DAY
01-12-2006 : New Delhi
HIV Free India: A Mission
While I am with you Honourable Members of Parliament on World AIDS Day, I realize for our country the important current health mission is to combat TB, water borne diseases like Diarrhea, and vector borne diseases like Malaria apart from cardiac diseases and cancer. However, for the last few years HIV/AIDS is threatening to become a silent killer, since infection to recognition of fatal disease symptom takes a decade.
Today, the thoughts on HIV/AIDS relating to my experiences in two situations, which I am going to discuss have important messages for all of us on how to encounter the type of problems, that HIV affected persons are going through in real life. I would like to discuss the topic ?HIV Free India: A Mission?.
The story of Benson and Bensy
First let me share with you an incident during my visit to Kochi in 2003. I was introduced to a boy and girl named Benson and Bensy as HIV affected children along with their grandfather by the Secretary, Department of Health, Kerala. Immediately, I started talking to the children and I greeted them. The children were cheerful. Then I was informed that these two children were in a school near Kollam, and as soon the school authorities came to know about their disease pattern, they were turned out of school. This was big news in the media in Kerala. The children were denied admission because of parental pressure since they did not want their children to be with HIV affected children. Then the Secretary, Health Department met me at Rashtrapati Bhavan and briefed me on the type of problems. During the discussions we realized that the type of education and communication we have to spread on HIV is not reaching parents, school teachers and many support groups. We took a decision, that educating people on HIV is very important through the media and above all even bringing together religious heads in various localities, who can spread the message that by touching HIV patients or having food together with them or mosquitoes biting them is not contagious unless the virus is transmitted through blood. The campaign for spreading of the message was implemented and subsequently the Kerala Government brought out a policy on HIV/AIDS for students, teachers and other staff in educational institutions of Kerala. Many parents in schools who had earlier opposed the HIV affected children studying in their school have now realized that they had misconceptions about the disease and now have no objection for their studying in that school. With generous contributions from a Corporate and with the active assistance of the district administration, the children are now being provided with special Anti Retro Viral treatment with regular check ups at the Trivandrum Medical College. Though this may be only one success story, I feel that there may be numerous other cases of discrimination, which may exist. It is here that the role of public leaders like Members of Parliament becomes very important. It is for the Members of Parliament to sit together and pass a legislation, which would prevent discrimination against AIDS patients in their day-to-day life. The Ministry of Health and Family Welfare is working on a draft legislation and I would call upon the Hon?ble Members to see that a robust and effective legislation is brought into force within the next six months.
In the mean while, Members of Parliament can take up the discrimination issue with local administrations, Panchayat authorities and NGOs working in the districts or blocks and create a movement so that the stigma and discrimination among affected people is totally removed in a time bound manner.
CII Leadership Conclave
The second incident which I would like to narrate took place in Bangalore where I was addressing a CII organized Leadership Conclave for the Young on 20th August 2005. When there was a detailed discussion of leadership qualities, I suggested to the members a base line will commence based on every participants mission on ? what will I be remembered for?.
Response from a participant
Smt. Asha Ramaiah, who is presently working as the National Advocacy Officer for the Indian Network for people living with HIV/AIDS and herself a HIV/AIDS patient since 1995 mentioned that ?the true learning in my life began when I had to face the reality of my situation. First, my husband?s family turned me away from their home and later even my father told me to leave our house. I had to preserve my life and then stand up and face up to the challenges of existence. I could absorb the feeling of shock due to my courage.
Today with the support received from my fellow people living with HIV, I am accepted in my family and community. My parents are proud that I have become a role model for others to follow. With a convinced family and good peer support, I got remarried to another person living with HIV in the year 2000. I could even to take a decision to have a child after following medical guidelines to reduce the risk. We came victorious waiting for years when it was confirmed that our child has no infection. We learnt that, dreams do come true but only when you own them and accept the responsibility of any possible risk in pursuing them. Now we have the responsibility for planning the future of my child for the next 20 years.? I am happy that today the medicine for preventing infection to the child of a HIV AIDS infected mother is available at a very low cost in the Indian market."
Smt. Asha Ramaiah also says, ?I will be remembered by people living with HIV/AIDS in many parts of the country and my family, relatives and associates for the courage I showed to stand up and face life, and for my efforts in sharing the light I have acquired in the midst of struggle?.
Friends, the message we get from the experience of Smt. Asha is that, as human beings we may get into a problem, but we should not get defeated. We should find out ways of defeating the problem and succeed. I am sure, there may be many such cases in different parts of the country who are suffering in silence. Members of Parliament can clearly see the very important message here, how the stigma attached to HIV makes even very close members disown their kith and kin. Also another important aspect is ? a HIV affected mother can give birth to a HIV free child through proper medical guidance and taking indigenously available drugs. Information flow throughout the country to remove the stigma attached to HIV and also availability of medicines to control HIV at different phases of the disease needs to be intensified. Members of Parliament can definitely in their constituency through Panchayats and religious centres communicate this to the people.
Today in our country, all age groups put together have an incidence of 5.7 million HIV cases. 163 out of 611 districts in the country have a high proportion of HIV cases. The scientific community had a very important mission of determining the genetic nature of HIV that will lead to its cure. The genetic nature when studied had some surprises. The retro virus is RNA based and not DNA based. Most retro viruses have only three genes, whereas the HIV virus had nine genes, with 9200 base pairs. With this understanding of the genetic nature, a number of drugs have come in at least to control HIV in as it is where it is condition. This intervention extends the life of HIV affected persons. The typical drug which has been developed and produced abroad is AZT, based on DNA synthesis. It halts the spread of the disease. Another medicine found is INDINAVIR with equally good results. A foreign University has tried a combination of AZT-INDINAVIR and 3TC, for some patients, which gave unique results fully suppressing the HIV AID virus. Of course research is continuing. I am sharing this with you friends, to convey that there is a possibility of controlling HIV and extending the life of patients. However, the cost of the medicine is prohibitive. The cost of drugs has to be brought down and it has to be made affordable and above all a temporary relief to the cost could be thought of for needy patients.
Development of Anti HIV Vaccine
Hence, apart from the HIV control protocol, the most important mission for the country today has to be the prevention of the spread of HIV further. There is no other way other than developing and leading to production an effective anti-HIV vaccine.
Phase one clinical trials of an imported Adeno-Associated Virus based HIV vaccine was initiated at the National AIDS Research Institute, Pune in early 2005. Thirty volunteers that were enrolled in the study and given HIV vaccine will complete follow up in January 2007. The vaccine has been tolerated well by volunteers and safety is good. Immunogenicity studies were carried out during the follow up. Results will be decoded and analyzed after follow up of the last volunteer is completed. In the event of the successful completion of Phase-I trials, technology transfer to an Indian company will take place. Another Phase-I vaccine trial was initiated last year at the Tuberculosis Research Centre for the Modified Vaccinia Ankara (MVA) based vaccine developed from the Indian HIV-1 sub type C virus genes. This vaccine has been developed by Indian Scientists in collaboration with a US company under the ICMR-NACO-LAVI programme. These two anti-HIV vaccines have to be completed with a time bound mission mode, as it is very important for India?s HIV control programme. It is also essential to take up a third fully indigenous anti-HIV programme as a collaborative work between Indian R&D institutions including traditional medicine based vaccines.
HIV / AIDS Diagnosis and Detection
It is essential for our national laboratories to launch a programme for a cost effective, diagnostic tool for HIV. Here let me share an Indian experience. NEVA-HIV is a test to detect HIV (AIDS) in a drop of blood within three minutes. It is a single step test in which a drop of blood is mixed with a drop of a reagent on a glass slide. If the blood sample shows clumping, it is positive for HIV. This clumping of blood can be easily seen with the naked eye. The test uses recombinant proteins consisting of NEVA-HIV and is one of the very few tests in the world that can be performed on whole blood, even from a finger prick. Developed, keeping in mind practical constraints of HIV testing in our country, NEVA-HIV is an instrument-free test. In addition, the simplicity and rapidity of the test, makes it suitable for use in village primary health centres in even remote parts of our country. This novel scientific development has been carried out by faculty members of the Department of Biochemistry of the University of Delhi in collaboration with the Department of Bio-Technology and Cadila Pharmaceuticals Ltd., Ahmedabad. I would suggest that the Health Ministry may like to study the efficacy of the test and introduce it in all our public health centres at the earliest. The next area of importance is removing the stigma of HIV patients.
I would like to make the following suggestions particularly to the Honourable Members of Parliament, research laboratories, the pharma industry and the Health Ministry.
1. Consider taking up control and prevention of HIV AIDS from their constituency within the next five years as an important mission.
2. The occurrence of HIV is found to be 32% among youth in the age group of 15-29 years and 40% of them are women. Considering this situation the Members of Parliament can create an organized awareness campaign among all rural youth and women in their constituency for enabling prevention of infection among this population through a well-organized prevention programme.
3. Creating a mechanism in partnership with societal organizations, medical institutions and Government for testing blood for any contamination and ensuring that contaminated blood is not stored in any blood banks in their constituency.
4. Consider facilitating hassle-free availability of all services such as schooling for children, rural employment, nutrition, health services, banking credit, training and employment to all people with HIV AIDS in their constituency. This will enable improvement of the quality of life of people living with HIV AIDS and make them feel that they are an integral part of society.
5. Consider creation of a HIV AIDS Foundation in partnership with philanthropists and NGOs in their constituency, which can provide financial assistance to needy HIV AIDS patients for their treatment and sustenance.
6. There are many reports in the country with certain experiences where certain traditional medicines drawn from herbal plants which have anti-HIV properties and cure. It is essential to identify such individual groups in and encourage their work to find out two or three herbal-based solutions for the cure of HIV and for an HIV vaccine.
My best wishes to all the Members of Parliament in their societal mission of making their constituencies HIV AIDS free. I am sure you will all be remembered for this important contribution towards this noble mission by all citizens of the nation.
May God bless you.