World Aids Day: HIV/Aids screening to be made compulsory for all

December 2, 2010

Courtesy: dawn.com

The Khyber Pakhtunkhwa government is considering legislation to make it binding on all people to undergo HIV/Aids test.

“The government will go for the legislation after which all people will be legally bound to undergo HIV/Aids screening. We have already made pre-marriage test of Thalassemia compulsory for the would-be couples,” said provincial minister for higher education Qazi Mohammad Asad on Wednesday.

Speaking as chief guest at a function held in connection with the World Aids Day at the Frontier Women’s College, the minister said that the legislation concerning compulsory screening before marriage was gaining social acceptability and with the passage of time more and more people would opt for such tests.

“Awareness is a shield against the deadly disease of HIV/Aids. We have to keep an eye on the immigrant workers who are being deported on account of having the disease,” he said and added that such people were the main cause of HIV/Aids spread in the country.

Mr Asad expressed his concern over the stoppage of funds for the HIV/Aids programme and said that it would further complicate the situation.

He expressed optimism that the government would provide funds to keep the programme activities going. He urged the students to get more information about the causative agents of the disease. On this occasion, the college students presented skits to highlight bad effects of the disease and ways to avoid it.

The minister said that the deported men were infecting their wives, who didn’t know about their health status.

“The only way to stem the tide of HIV/Aids is to put all those returning from abroad to compulsory screening at the airports. He said that though people hesitate to be subjected to HIV screening, there was no other way to stop the transmission of the disease.

Another function concerning HIV/Aids awareness was held at the Badhber camp where experts advised Afghan refugees to keep themselves limited to their wives.

“Afghan refugees living here frequently cross the border to their country due to which they are at the razor edge of the infections disease,” Dr Jawad Habib Khan of the Project Directorate of Health for Afghan told the audience.He also said that re-use of syringes, transfusion of unscreened blood and shaving at the barbers’ shops should be avoided to stay safe from the pandemic.

“There is an urgent need to tell people about the transmission of the disease, otherwise the HIV/Aids could snowball into major health problem in the country,” he said.Later a awareness walk was also held which passed through the Afghan refugee camp.

All Women Advancement and Resource Development, a local NGO, organised a camp near the Khyber Teaching Hospital where HIV/Aids-related literature was distributed among visitors. Maimoona Noor, head of the NGO, asked the government to provide free test facilities, including CD-4 and viral load because poor patients could not afford cost of the investigation.

She said that creating awareness of the disease through dissemination of information was the right and favourable way to step the disease.

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Engineered version of HIV is used to cure genetic blood disorder

September 24, 2010

Courtesy: bellinghamherald.com

For the second time, researchers have used the HIV virus in gene therapy to cure a severe genetic disease, this time the blood disorder beta-thalassemia, which causes life-threatening anemia.

French researchers had previously used a “defanged” version of the virus that causes AIDS to cure two boys with the rare disorder adrenoleukodystrophy, which was at the heart of the popular movie “Lorenzo’s Oil.” Beta-thalassemia is a much more common disease, and although the new research involved only one patient, it suggests that this approach could have wide applicability.

“This work represents a major step forward for the gene therapy of hemoglobin disorders,” wrote Dr. Derek A. Persons of St. Jude Children’s Research Hospital in Memphis, Tenn., in an editorial accompanying the report in the journal Nature.

The feat marks at least the sixth disease for which gene therapy has recently been shown to be beneficial.

Beta-thalassemia is caused by defects in the production of the beta-globin chain, a key component of hemoglobin, the molecule that carries oxygen in red blood cells. It affects primarily people of Mediterranean, Middle Eastern, South Asian, Southeast Asian and Chinese descent, with about 60,000 children being diagnosed with it worldwide each year.

Treatment generally involves frequent blood transfusions – typically monthly – but that leads to a buildup of iron that can damage organs. As a result, patients must also undergo chelation therapy to remove as much of the iron as possible. The disease can be cured by bone marrow transplants, but only if a suitable donor is found.

The researchers in the new study used an HIV virus that had been engineered to carry the correct version of the hemoglobin gene. Most previous research on gene therapy has used other retroviruses, such as the mouse leukemia virus, to carry the desired gene into cells. But those so-called vectors had a tendency to insert genes in the wrong locations, leading in some cases to cancer. Attempts to try gene therapy in patients were put on hold until scientists could overcome the problem.

Dr. Philippe Leboulch of the University of Paris and his colleagues used the HIV-based vector – produced by Bluebird Bio of Cambridge, Mass., and Paris – to treat an 18-year-old French boy who had been diagnosed with beta-thalassemia at age 3. Before the treatment, he was receiving three packs of red blood cells monthly and chelation therapy to remove iron, but was still ill. No suitable bone marrow donor was available.

The team removed blood-forming stem cells from the patient’s bone marrow and treated them in a test tube to add the working gene. The boy was given chemotherapy to destroy as many of the remaining stem cells as possible, then the treated cells were injected.

Within a year, the boy was able to stop receiving transfusions, and he has remained stable for 22 months since then.

“He is happy to have a normal life back, and for the first time has a full-time job in a main restaurant in Paris,” Dr. Francoise Bernaudin, the clinical hematologist who has been monitoring his condition, said in a statement. The team has also been able to remove excess iron that has built up over the years by bleeding him regularly, she said.

The researchers are planning to enroll another 10 patients for more studies.


Before you say ‘qubool hai’

August 23, 2010

Courtesy: tribune.com.pk

When five-year-old Affifa goes to school she carries more than the burden of books on her shoulders. “My daughter was diagnosed with Thalassaemia, a blood disorder, at the age of three,” says Wajahat Ayaz, who works as an engineer at a leading power company in Karachi.

Affifa’s problems are compounded not only by the fact that her body generates an abnormal form of haemoglobin cells, but also by her rare blood group, known as the Bombay blood type. According to Dr Saqib H Ansari, chief of the Thalassaemia programme at the National Institute of Blood Diseases, there are only seven known donors in the country who share this blood group. “Patients like Affifa survive on blood transfusions, but it becomes a huge problem when one has a rare blood group because one can’t find matching donors,” Ansari says.

However, the little girl is lucky for now. Nuzhat, a woman of 40, is providing crucial life support for Affifa. “I will donate my blood to her as long as I live,” says Nuzhat. But what will happen after that?

Ayaz, who earns around Rs30,000 a month and spends close to Rs10,000 of that on monthly treatments for his daughter, says he can only pray that a miracle like Nuzhat will be around. However, that’s not the issue which torments him each day.

“If only I knew that we, the parents, would be the cause of her illness,” laments Ayaz, without saying anything about what he would have done had he known this fact beforehand.

Thalassaemia is a genetic blood disorder which a child inherits from their parents. “If both parents are Thalassaemia minor — that is, they carry the disease but it is not active in their system — there is a 25 per cent chance that their child will be a Thalassaemia major — an active patient –a 50 per cent chance that she will be a Thalassaemia minor and a 25 per cent chance that everything will be normal,” says Ayesha Mehmood, the spokesperson for the Fight Against Thalassaemia (FAiTh). Also, if a Thalassaemia minor’s partner is normal, their children, in all likelihood, will be born free of the disorder.

initiatives

Ayaz supports recent initiatives taken in certain provincial assemblies regarding the nikahnama law that advocates testing for blood disorders like Thalassaemia, Hepatitis C and HIV/AIDS in couples before they marry. He suggests the government should make it mandatory to mention blood types on national identity cards so that potential donors can be identified.

But so far the Khyber Pakhtunkhwa provincial assembly is the only legislative body which has passed a bill making it mandatory for couples to carry out Thalassaemia and Hepatitis C tests before the marriage takes place. The law does not ban couples from getting married if they find out they are both, for example, Thalassaemia minor carriers, but it gives them the advantage of knowing what they’re getting into. Meanwhile, the Sindh Assembly has to date only passed a resolution urging the federal government to consider making such tests compulsory.

On July 08, 2010, the Punjab government’s Local Government and Community Development Department proposed eight amendments to the nikahnama law; these included complete medical check-up reports prior to marriage. However, the amendments were criticised because of the caveat that the nikahnama document must also be signed by the parents of the consenting adults and were consequently withdrawn.

Member of the National Assembly Sherry Rehman has strongly criticised the Punjab government’s move. Rehman fears the measure might increase the number of forced marriages in the country. “Having parents sign the nikahnama would have meant the return of the wali system for women. The Lahore High Court has a ruling against it,” she says. She added, however, that she was all for testing couples for disorders before marriage and would strongly advocate such a bill.

Meanwhile, Masood Alam, who is about to get married this year, voices another concern. He says that even if blood testing before marriage becomes federal law, it would be hard to convince families that it is a healthy measure. “I and my fiancée may agree, but our families might not want us to get tested because of social pressure and superstition,” Alam says.

Even Nuzhat, Affifa’s donor, says that girls in Pakistan already face a lot of problems getting married and the proposed changes to the nikahnama law may become an added hurdle.

Dr Ansari proposes a solution. “We can follow the Iran model, where the man is asked to get tested first,” he says, adding that the woman only need be tested if the man is found to be suffering from, for example, Thalassaemia minor.

Also, families can be convinced about the benefits of testing with a little persuasion, says Shahzad Shah, who married in 2009 and got himself and his fiancée tested before marriage. “After we told our families about the advantages, they themselves took us to get our blood tests done,” Shah says. He adds that today he is a proud father and his daughter has no genetic blood disorder.

Religious scholars say that while conducting blood tests is not a necessity before marriage, according to Shariah law there is no harm in doing so. Darul Uloom Karachi’s Mufti Asghar Rabbani and Jafferia Alliance’s Maulana Sheikh Hasan Salahuddin say tests can help identify problems that an unborn child might face, because in the end, the child has to suffer the consequences.


NHRC issues notice to Raj govt on infected blood transfusion

July 20, 2010

Courtesy: centralchronicle.com

The National Human Rights Commission has taken suo motu cognizance of a report alleging three child patients caught HIV and 17 others are suffering with Hepatitis-C due to infected blood transfusion in Rajasthan.
”We recieved some media reports that due to infected blood transfusion, three child patients of Thalassemia have caught up HIV and 17 are suffering with Hepatitis-C in Ummed Hospital at Jodhpur,” a spokesperson for NHRC said today.

The NHRC issued notice to the state’s Principal Secretary, Health and Family Welfare, and directed him to provide a report within four weeks from the date of its receipt.

The patients’ relatives have alleged that the state government has not provided facilities for the Neutrophils test even after five months.

This test is necessary to diagnose infection in blood.

Neutrophils are a type of mobile white blood cells that capture foreign particles and bacteria.

”The reports also alleged that a number of Thalassemia patients have become victim of infected blood transfusion in the past as well in the state,” the spokesperson added.

The Commission observed that the contents of the media reports, if true, raise serious issue of violation of human rights of the child patients.


Indian children with AIDS from infected blood transfusions

July 20, 2010

Courtesy: asianews.it

Jaipur (AsiaNews) – Three children who suffer from thalassemia in Jodhpur in Rajasthan this week contracted HIV after blood transfusions required to treat the disease. It is not the first time that such cases occur in India.  According to statistics, over the past five years thousands of children have fallen ill with AIDS after blood transfusion from the state blood bank.

Marwar Thalassemic Society says that in the last six months eight children have contracted HIV and hepatitis C for 43 additional transfusions of infected blood. The three children are in care at the Ummed Hospital which treats children with thalassemia free of charge. Hospital managers said they had scrupulously followed the guidelines of the National AIDS Control Organization. Both hospitals blood banks are testing to verify that the donated blood is healthy, but often this is not enough.

“Tests of blood cells are not adequate,” Pascoal Carvalho, immunologist and member of the Pontifical Council for life tells AsiaNews. “We need the Nucleic Acid Testing (NAT), but since it has a very high cost it is not always done”.

Performing NAT on the blood cost 1000 rupees (16 Euros) and in most cases the cheaper Elisa test is carried out: “The Elisa test” continues the doctor, “often fails to identify the HIV virus, especially since detects it only after the virus has been circulating in the donor’s blood for three months”.

India’s health system is well aware of the technologies needed to solve the problem, but does not invest: “The government must urgently upgrade its monitoring system in blood banks. The problem of infection is even more tragic because they are poor families who use government blood banks.

For Pascoal Carvalho, the only positive note is that better therapies are being introduced to treat thalassemia. But the doctor calls the government on its responsibilities: “The instruments for Nat cost 400 thousand rupees (6700 million) and 1000 rupees each test, but poor patients can not afford it. Only the government can require that Nat be used in all hospitals and blood banks and provide subsidies for those who must take the test. Only then will we avoid similar tragedies in India. ”

Fr. Antonio Grugni, PIME missionary and doctor in Mumbai, told AsiaNews about the health situation in India: “The number of poor in India is enormous and they can only afford public health, where there are few doctors for a huge amount of patients. You can not say that the government does nothing: the cure for tuberculosis and leprosy are free, for example. It is not true that in India there is no money. There are but are often misused by individual states”.


8 kids test HIV+ after blood transfusion

July 14, 2010

Courtesy: ibnlive.in.com

Jaipur: Eight children suffering from thalassemia were found to be HIV positive and 43 children were infected with Hepatitis C after the blood transfusion in Jodhpur.

A probe by the Thalassemia Society has revealed that 51 patients got infected during blood transfusion at the Ummed Hospital in Jodhpur. The glaring negligence was found after the Thalassemia society conducted lab tests on these children.

“The blood that is being transfused into the children may contain HIV strains. This is why when the blood tests were conducted on December 28, 2008, only five cases of HIV positive and 29 cases of Hepatitis Cwere identified among the kids. When the tests were conducted again in May by the SN Medical College, numbers increased from five to eight HIV positive cases and from 28 to 46 Hepatitis C cases, ” said Secretary Vipin Gupta.

“The thalassemia patient is dependent on blood transfusion. The danger of the wrong blood entering the body is always there. But what can we do?”, said a local resident.

Hospital authorities blame lack of critical medical facilities to detect impure strains in blood for the fatal error.


Raj Govt. sets up committee to probe HIV+ blood transfusion

February 11, 2010

Courtesy by: mynews.in

Jaipur: Rajasthan Government has constituted a three-member committee to probe the episode of blood transfusion from HIV positive donors to six thalassemia children causing HIV infection in them.

Medical Education Secretary CM Meena said the government had been informed that five patients in Jodhpur and one in Tonk were given blood donated by HIV positive donors without mandatory blood testing and investigations.

This erratic blood transfusion led to transmission of dreaded HIV infection in these patients, Mr Meena said adding that a three-member committee headed by Rajasthan AIDS Control Society President RND Purohit would probe the entire episode and would submit its report within seven days.

Mr Meena said the state government would take all measures to save the lives of these patients.


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