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.

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.

Positive response to premarital test

January 3, 2010

Courtesy by: thepeninsulaqatar.com

DOHA: An awareness campaign on pre-marital health screening being waged by the Supreme Council of Health (SCH) focusing major shopping malls in the city has generated a positive response from the public, the SCH said yesterday.

Qatar launched the mandatory pre-marital tests on December 13. The Communication and Media Department at SCH launched the campaign earlier this month to raise public awareness about the tests through a variety of programmes.

The SCH has set up stalls at shopping malls to provide detailed information about the tests to the visitors and clear their doubts.

Trained nurses are available at the stalls to interact with the visitors and answer to their queries. Informative posters, flyers, booklets, and CDs about pre-marital screening are also being distributed to the visitors.

A video highlighting the importance and procedures of the screening has been shown at these stalls. The stalls are open from 5pm to 9pm daily and from 2pm to 10pm during the week-ends.

“These stalls have been attracting a good number of visitors daily. One of the most frequently asked questions by the visitors is regarding the confidentiality of the tests,” SCH said in a statement yesterday.

SCH has already made it clear that the special committee dealing with pre-marital tests will ensure strict confidentiality to protect the rights of all the concerned parties.

Physicians and paramedical staff, such as nurses, lab technicians and others should strictly abide by the commitment not disclose any medical secrets that come to their knowledge.

Regarding the individuals intending to get married and their relatives who are subject to the medical examination process, a special non-disclosure declaration is developed to be signed by both parties to maintain confidentiality.

The screening aims to prevent the spread of hereditary, genetic and communicable diseases in the society and create a more healthy future generation.

The inherited and contagious diseases included in pre-marital screening are: sickle cell ; hemoglobin abnormalities, i.e. thalassemia and sickle cell; testing the clotting factor to discover Hemophilia (A &B) if there is a family history or any medical indicators of the disease; syphilis, HIV (AIDS), hepatitis B & C. The tests have been conducted in five primary health care centers- Airport, Rayyan, Gharrafa, West Bay, Al Khor.

Notes: 6th National Thalassemia Conference & Workshops

December 25, 2009

6th National Thalassemia Conference & Workshops
17th – 19th December 2009

Day 1: Conference Inauguration – Pearl Continental Hotel, Lahore

Ceremony started with Tilawat-e-Quran at 4 pm, Mr. Hussain Jafri, Secretary General TFP Punjab Chapter gave Welcome Address, and Dr. Yasmeen Rashid Secretary General TFP gave introduction of TFP.
TFP was established in 2004, Thalassemia patients registered with TFP are 25000, 39 NGOs working with TFP till date.

Prevention program being designed and developed by the help of WHO.

More than 15 billion are being subjected for the prevention by Punjab Government.

Mr. Iqbal, TFP Exec. Comm. Member being called to let us know the feedback of a Thalassemic parent, Dr. Jovaria Manna, Chairperson, Medical Advisory Board briefed us about scientific sessions and workshops of the next two days.

Dr. Jovaria informed us about Uniform Protocol, book on iron chelation therapy guideline which she has edited and being distributed all over Pakistan.

Mr. Iqbal told us about his blood bank and Thalassemia center, which is in Karachi and working successfully.

Address by Guest of honor Prof. Majeed Chaudhry, Principal, FJMC & Prof. Humayun Maqsood, Principal, FMCMD.

Both of them appreciated TFP’s work and event and and promised to support conference by all means.

Lt. Gen (R) Moin-ud-din Haider, President TFP thanked all for attending, requested for moral and monetary support for TFP and societies, told us about government being concerned in Thalassemia issue these days and gave shields to the mentioned below patients on their achievements.

1) Ayesha Murtuza from Abbotabad – LLB
2) Laiba Mukhtar from Lahore – 3rd position in Inter & 1st in I.COM
3) Master Abdul Samad – 5th passed Hafiz-e-Quran
4) Mujtaba Shareef – Hafiz-e-Quran
5) Miss. Atiya Kamran from Karachi – Inter pass, married
6) Mr. Ejaz Haider from Karachi – Volunteer for Fatimid
7) Ameen Tipu – Earning, married & have two kids
8) Usman – Hafiz-e-Quran

– End of day 1 –

Day 2: Patient Safety Awareness Workshop in Collaboration with World Health Organization – Fatima Memorial College of Medicine & Dentistry, Lahore

Started at 9:30 am with Tilawat-e-Quran, Dr. Yasmeen Rashid gave briefing over the workshop objectives; workshop was conducted by WHO on their World Alliance Of Patient Safety.

She briefed about iron chelation, transfusion, screening, hepatitis, aids, etc.

She even requested the NGOs to care about screening, cleaning and hygiene.

Later on Mr. Hussain Jafri briefed us about World Alliance of Patient Safety program.

WHO launched this program in October 2004.

Programs started under World Alliance:
1) Patients for patient safety
2) Patient safety research
3) WHO patient safety campaigns
4) Education and training
5) Implementing change

You can read about IAPO – International Alliance of Patients Organization at their website: IAPO

After Mr. Hussain, Dr. Jovaria came on dice to give us guidance over Patients Safety, she told us a patient should be aware of everything, he should ask the nurse while getting transfuse about screening, blood bag details, make sure that blood belongs to him, patient should get vaccination done, she even advice to get splenotomy done by good doctor not by any general surgeon.

After Dr. Jovaria, Question and Answer session was conducted, followed by panel-list of three doctors, three society member and three patients.

I was given the chance to be among the three patients, was given chance to brief over my activities and Thalassemia.com.pk, which got appreciated by all the people attending.

– End of day 2 –

Day 3: Prevention & Treatment of Hepatitis B & C of Patients Receiving Multiple Blood Transfusions – Fatima Jinnah Medical College, Lahore

Day 3rd was a bit hard to manage, as there were two things going on side by side at the same timings, one side conference over Hepatitis, other side scientific sessions over exjade, prevention & genetic counseling.

Not much new was being told, but there was a session which I wanted to attend badly and I have made notes of it, sharing it with you

Management of Pregnancy in Thalassemia Major – Dr. Yasmeen Rashid:

Patient who want to start new family should work hard to get her ferritin as low as 500, and must maintain her hemoglobin at 10 – 11 gram.

Pre Pregnancy Counseling:
Iron chelation is discontinued for 9 months

Pre Pregnancy Evaluation:
Cardiac, Liver, Vessels, Pancreas, Viral Infection, Iron Status – all things should be monitored closely.

During Pregnancy:
1) Iron should be around 300 to 500 for better health of baby.
2) Hemoglobin should be maintained at 10 – 11 gram.
3) Low blood transfusion, small quantity every 10 to 15 days to give enough oxygen to the body.
4) Vital signs should be monitored during transfusion.
5) Discontinue iron chelation.
6) Continuous check on ferritin level.
7) Cardiac monitoring every 3 months.
8) Endocrine function, oral glucose test should be done
9) Last but not the least, Best doctors!

Effects on the fetus if anything is wrong:
1) Fetal Hypoxia
3) Premature Labor
4) Fetal Demise

One should wait for normal delivery to happen, but as it takes lots of efforts/energy so the patient should be monitored closely for cardiac functions.

In case of IUGR or Fetal distress cesarean should be performed.

Iron Chelation should be started within the first week after delivery.

– End of day 3 –

Program Guide: Day 1 , Day 2 , Day 3 a , Day 3 b

Pictures: 6th National Thalassemia Conference & Workshops

Note: I have made notes of my interested topics only, but I have attended almost every session… If you want to know about anything kindly drop a comment I will try to respond as soon as possible… But to be frank there wasn’t much new knowledge to hear.

What is Thalassemia?

December 10, 2009

Courtesy by: 24medica

Thalassemia is an inherited condition that causes a problem in the production of hemoglobin. This leads to anemia, which is a low red blood cell count.

What is going on in the body?
Hemoglobin carries oxygen from the lungs to the tissues. It also carries away the waste product of carbon dioxide. In thalassemia, something goes wrong with the production of hemoglobin. When defective hemoglobin is incorporated into red blood cells, the red blood cells do not function properly. They are more likely to die off. This leads to anemia.

Thalassemia is an inherited disorder. In a person with thalassemia, one or both parents are positive for the disease. When one parent is positive, the child will have thalassemia minor. When both parents are positive, the child will have thalassemia major.

What are the causes and risks of the disease?
Thalassemia is a common genetic disease. It is more common in people of African, Mediterranean, and Asian heritage.

What are the treatments for the disease?
With severe thalassemia, regular blood transfusions are needed. The person will also require folic acid and other nutritional supplements.

An individual who has frequent red blood cell transfusions can develop iron overload. This can be avoided with chelation therapy. This is a process that removes excess iron from the body. This therapy may need to be started early in childhood.

Some treatments for thalassemia are still being tested in clinical trials. These include:
– changing the abnormal hemoglobin genes using medications similar to those used in cancer chemotherapy
– bone marrow transplant and infusions of stem cells, which are starter cells
– specific gene therapy targeted at the abnormal chromosomes

These approaches are usually reserved for severe thalassemia.

What are the side effects of the treatments?
Frequent blood transfusions can lead to an iron overload. Excess iron can end up in various body tissues and cause skin discoloration, liver disease, and diabetes. Chelation, which involves daily injections of an iron-binding agent, can help eliminate the excess iron from the body.

There are risks with any blood transfusion. These include an allergic reaction, infection, and sometimes hepatitis or HIV, the virus that causes AIDS.

Bone marrow transplants can cause the body to attack the new bone marrow. Or the new bone marrow may not function at all.

What happens after treatment for the disease?
A person with severe thalassemia may need frequent blood transfusions for the rest of his or her life.

How is the disease monitored?
Thalassemia is monitored by frequent blood tests. The person will need to be followed closely by the healthcare provider. Any new or worsening symptoms should be reported to the provider.

Pre-marital medical check-up from Dec 13

December 10, 2009

Courtesy: gulf-times

The mandatory pre-marital medical check-up being proposed in Qatar since 2007 will be officially launched on December 13, Media and Communication department director of Supreme Council of Health, Jassim Fakhroo, said yesterday.

A media campaign aimed at creating awareness on the process among residents, especially would-be couples, begins today.

The launch of the medical check-up, sponsored by Qatar Petroleum and Qtel, was initially scheduled for September 2007, but was delayed due to some technical reasons.

The compulsory pre-marriage check-up will test couples for infectious diseases like HIV, hepatitis and genetic and hereditary ailments to prevent them from giving birth to children with complicated diseases, deformities or abnormalities.

Pre-marital medical screening is a religious and civilised requirement which has been endorsed by the Arab League with some Arab countries, including Qatar, passing laws and regulations on the testing.

In 2006, HH the Emir Sheikh Hamad bin Khalifa al-Thani had passed instructions to issue the Family Law No. 22 for 2006, which stipulates – in its Article No. 18 – mandatory pre-marital screening for all, with the aim of maintaining better health for tomorrow’s generations, and building up the society of health and wellness.

An Emiri decree was issued on June 29, 2006 enforcing the provisions of the Family Law, and Article 18, chapter three of the decree stipulates that a separate medical certificate shall be provided by the competent authorities to each one of the couple concerned before certifying the marriage contract.

However, while maintaining the confidentiality of the test results, the pre-marital committee would not stop couples from getting married in case of negative results.

According to documents made available to mediapersons by the SCH officials yesterday, in the Arab world – including Qatar – there are certain prevalent genetic diseases, which are hereditary anemias (sickle cell anemia and thalassemia), spinal muscular atrophy (SMA), inherited metabolic diseases in general particularly homocystinuria in Qatar and cystic fibrosis.

In the report, professor of Paediatrics and Genetics at Well Cornell Medical College-New York and Qatar and an adviser to SCH professor Ahmad Teebi said all the diseases were transmitted through autosomal recessive genes that are driven primarily by cousin marriages.

“The married couples are usually cousins or distant relatives, that is why such diseases spread in most Arab countries due to the prevalence of cousin marriages. However, marriage of non-related couples does not guarantee the birth of healthy children free from genetic disorders and birth defects,” he explained.

Professor Teebi said pre-marital screening was highly important regardless of the degree of relationship between the couples (future husband and wife).

“In other words, pre-marital screening is equally important for relatives and non-relatives,” he added.
He stressed that pre-marital screening for both man and woman will reveal if one or both are carriers for the same disorder tested.

“The advice is to avoid the marriage if both are carriers as their chance to have children affected with the disease is 25% or one in four in each pregnancy,” he cautioned.

“We all know that the person carrying the hereditary disease is not a sick person or looking abnormal. On the contrary, he/she is fit but only carrying disease genes that can be transmitted to his/her children,” professor Teebi explained.

He mentioned that on average each human carries around three deleterious recessive genes. If the same gene is shared with a partner the chance of having affected children will be high. When one of the couple is a disease carrier, and the other is not, there will be no problem.

Examination clinics’ schedule
A number of health centres in the country have been designated as pre-marital examination clinics.
The health centres will operate according to the following time schedule:
* Morning: Airport Health Centre
* Evening: Al Khor Health Centre
* Morning: Al Gharrafa Health Centre
* Evening: Airport Health Centre
* Morning: Al Rayyan Health Centre
* Evening: West Bay Health Centre
* Morning: Al Khor Health Centre
* Evening: Al Rayyan Health Centre
* Morning: West Bay Health Centre
Clinic working hours:
Morning: 8:00 – 1:00pm
Evening: 5:00pm – 10:00pm

No yardstick set to check quality of imported drugs

July 13, 2009

Courtesy by: nation.com.pk

KARACHI – The Health Ministry has allowed the import of life-saving drugs from China under the FTA and India as well despite the fact that it will greatly diminish the local drugs market worth of Rs1.5 billion, the Nation has learnt.
It has been learnt that the Health Ministry has refused to stop the imports of finished goods that are not produced in Pakistan like anti-cancer vaccines and thalassemia drugs etc, from China and India although there are clear indications that these drugs are not standardised.

For instant, Interferon, an injection for Hepatitis, which is not produced in Pakistan and available at different prices up to Rs 12,000, is being imported from China. But the issue is that no standard has been set to determine its quality that make the lives of millions Pakistanis so vulnerable.

“Though the import of these drugs are allowed, our main concern is that only those drugs should be allowed to Pakistani market that have been registered at least at 2 places in the big countries of the world,” said Qaiser Waheed, ex-chairman Pharmaceutical Association of Pakistan.

He pointed out that Bangladesh had made it mandatory only those drugs should be imported into the country that were registered in 2 countries of Europe or Japan and Australia. However, in Pakistan, the case is entirely different as no system has been put in place to check these drugs coming from China and India, he wondered.

“It is to be noted that the anti-cancer and antibiotics coming from China are not original and have no certified information that make them standardised,” he disclosed.

However, the Health Ministry is of the opinion that China is a friend of Pakistan and there exists FTA between both the countries, therefore, it is not possible for them to stop the import of such life-saving drugs into Pakistan.

It was learnt that the Ministry is habitual to register drugs at the rate of Rs 15,000 and does not carry out any necessary investigation to make it sure whether the drug is worthwhile to use or not. On the other hand, China takes from Rs 0.7 to 0.8 million to register Pakistani drugs and even then they put a clause that the drug has to be tested in the government laboratories for 4 years to make it available for public there.

Interestingly, the Health Ministry is busy in making random registration at cheap rates without considering the fact that human lives are more precious than money, he added.

The Chinese and Indian products are very cheap due to the fact that industrialists there are provided with free land, free power and money to establish industries, but in Pakistan it is a dream to have free land for establishing any sort of industry.

The Pakistani drug market has potential of billions of rupees in which just 25% share is of imports but through the measures of the Health Ministry it has been cumbersome for Pakistan to cope with such issues of future threats by unregistered imported drugs being spread in the Pakistani market.

Marriage hopes dashed

March 13, 2009

Courtesy by: SaudiGazette.com

RIYADH – Hopes of over 10,000 persons wanting to tie the knot were dashed as obligatory pre-marital tests conducted by the Ministry of Health found them unfit to marry.

A majority of those failing the tests suffer from venereal and hereditary diseases. The results revealed 39 cases of AIDS, 2,075 cases of Hepatitis B and 549 cases of Hepatitis C, Al-Watan said.

The report showed that 6,201 people were found suffering from sickle cell anemia besides 1,235 cases of thalassemia (a hereditary disease resulting from defects in the synthesis of the red blood pigment hemoglobin).

Dr. Khalid Marghalani, spokesman of the Ministry of Health, said 166,657 people have so far undergone pre-marital tests since the introduction of the obligatory test in 2005.

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