Most Hyderabad blood banks not safe

Courtesy: timesofindia.indiatimes.com

HYDERABAD: The next time somebody from your family requires blood transfusion, cross your heart. The chances are that the blood procured from a blood bank will not be free of viruses that can cause deadly infections. “It’s a bloody mess at the state’s blood banks and only a few well-known names are free of problems,” said a source familiar with the state of affairs. “Many unsuspecting patients contract deadly disease like HIV and Hepatitis B and C because of blood transfusions,” he added.

The worst hit are those who need blood routinely, such as children suffering from thalassemia. In the last four years as many as eight thalassemic children contracted HIV and Hepatitis C & B infections during the course of blood transfusion. Rajesh Popli, secretary, Society for Thalassemics, says that at least five thalassemic children tested positive for HIV in the last two years alone. “As per our information, these children are from Hyderabad, Visakhapatnam, Nizamabad, Medak and Krishna,” said Popli.

That the stock of blood in many banks is suspect is corroborated by the government itself. The Drug Control Administration’s recent state-wide survey of 219 blood banks found that just about a handful of them met the quality standards. The lapses included non-functioning air conditioners and the use of “rapid testing techniques” by most banks (to reduce the cost of screening) which could miss detecting these fatal infections.

“We found that around five blood banks of the total 219 were following the quality standards,” said a DCA top official, adding that notices were being issued to the erring banks to beef up their standards. And that’s all in the form of punishment for these banks!

As per norms, blood should be screened for communicable diseases including HIV I & II, Hepatitis C & B, malarial parasite and Venereal Disease Research Laboratory (VDRL) test. “The problems are cropping up because of the absence of technically qualified persons. Pathologists are mandatory but many are unwilling to work in blood banks. Besides, blood screening costs are high,” said Dr V Saraswati, who is with NTR Blood Bank, which doctors say complies with most standards (along with Chiranjeevi Blood Bank). Some blood banks, as per the DCA survey, were even found lacking equipment.

While pathologists are meant to declare blood ‘safe’ for use, they prefer working with hospitals over blood banks. The banks are also wary of hiring them because of the high salaries they demand. Focused on cutting cost of screening processes, blood banks flourish thanks to an indifferent government. Worse, the government shies away from introducing tests that could help such as the PCR test which can detect infections even during the window period (the period from the time of contracting infection to testing positive for it). “The PCR test charges range between Rs 2,000 to 3,000 per test and it is not feasible to do this test on lakhs of units,” said an official from AP State Aids Control Society.

Thalassemia Society to start blood bank today

Courtesy by: expressbuzz.com

HYDERABAD: The Thalassemia and Sickle Cell Society, a non-profit group that seeks to provide relief to the tens of thousands of children afflicted with the diseases annually, will inaugurate a blood bank at Chatta Bazar here on March 20.

Thalassemia and sickle cell are inherited blood disorders that affect haemoglobin production. More than 40,000 new victims are diagnosed yearly. The diseases require frequent blood transfusion, often once in a fortnight, for the patients to live. This requires children with the disorders to receive dozens of blood transfusions before their third birthday.

At a press conference here today, parents of afflicted children explained the stresses under which they had to operate.

“We feel like no one will help. We constantly have to worry about where the next transfusion will come from,’’ said a parent. To mitigate these concerns, the Thalassemia and Sickle Cell Society aims to bring several operations, including diagnosis, transfusion and storage of blood under their new facility. It also seeks to pair patients with regular donors to reduce the chances of bloodborne infections. Any person can adopt a thalassemia child and become what they call `blood brothers’.

The new blood bank’s location was stragetically chosen to cater to Hyderabad’s most disadvantaged children. Most of Hyderabad’s blood banks are situated in the new city, and very few are south of the Musi.

Honoring Sophia

Courtesy by: cnylink.com

Thirteen-month-old Sophia Stagnitta, of East Syracuse, will grow up receiving blood transfusions.

Little Sophia was diagnosed with Beta-Thalassemia Major, also known as Cooley’s Anemia, when she was 11 days old, her mom Jennifer said last week at Skaneateles High School. Jennifer and Sophia were in town for a blood drive being held in Sophia’s honor at the school where her dad, Scott Stagnitta, is a middle school teacher.

Beta-Thalassemia Major is a genetic blood disorder that prevents or greatly reduces the body’s ability to produce adult hemoglobin and causes anemia, which is a lack of iron.
Jennifer said Sophia thankfully has not had to have any blood transfusions yet, but each month the family goes to University Hospital’s Pediatric Hematology/Oncology department to have the toddler’s hemoglobin level tested.

“Her hemoglobin level has been up and down, but in the normal range,” Jennifer said.

While Sophia’s levels have fluctuated between 10 and 11, once the levels drop to a 6 or 7, she will need at least one transfusion each month. But with transfusions also come more concerns as receiving blood can cause an iron overload, which in turn will mean Sophia will have to endure therapies to remove iron from her blood. The two methods of removing iron are either through taking a pill orally, but not everyone can take it, or through a method called Chelation Therapy, which requires a needle to be inserted into the body to aid in removal of heavy metals.

“The only way to cure this is a bone marrow transplant,” Scott said, but even then the marrow has to be an identical match from a sibling.

The entire process for a bone marrow transplant would be seven months or more.

“If we were going to do it that way, they want to do it while she’s young,” Scott said.

The younger she is, the less likely it will be that her blood is overloaded with iron, and she would have to be closely monitored.

One issue that stands in the way of even looking into bone marrow transplant is Sophia is Scott and Jennifer’s first child — she has no siblings to be matched to.

“We definitely want another child,” Jennifer said, adding she and Scott have met with a genetic counselor and are aware there is a 25 percent chance of having a second child with Beta-Thalassemia Major. “It’s a lot to think about.”

According to Jennifer, after being diagnosed, her hematologist said Sophia may need her first transfusion at 6 months old but has been fortunate to come this far without having to receive blood.

“I think the hardest part is looking at her and knowing something is wrong,” Scott said.

But for the unknowing person to look at Sophia, she appears to be a normal, active and perfectly healthy 1-year-old. She’s full of energy and on target as far as height, weight and other such benchmarks.

“She’s very active. You’d never know what’s going on,” Jennifer said.

While the blood disorder is rare in the United States and Canada with only around 700 people being affected by it, Jennifer said that’s not the case in places like Italy where a large portion of the population has some form of Thalassemia. Both Jennifer and Scott are of Italian descent and therefore there was a chance they may pass the disorder on to Sophia.

There was no prenatal screening for the disorder or much reason for concern when Jennifer was pregnant, though, as both parents are young and in good health.

For the time being, the young family is living life as normal with a monthly trip to the hematologist.

“We’ll try to keep it normal for her,” Jennifer said.

One thing they have learned is not to dwell on it. Another is to be thankful for things like the Red Cross blood drive on Thursday, where there was an overwhelming amount of support from the community for Sophia.

Sophia may not receive blood donated last week by Skaneateles’ teens and teachers, but the donations will help replenish the blood supply and will go to those who need blood now.

According to statistics from the American Red Cross, at some point in our lives, 80 percent of us will require a blood transfusion and only 4 percent of eligible donors donate.

“We’re honored they would think of Sophia,” Jennifer said.

Lady Cards help raise money for their adopted 4-year-old

Courtesy by: beaumontenterprise.com

Larry Tidwell had been to the Whataburger in Winnie at least a dozen times on the way back from recruiting trips to Houston, and it had never taken him this long to get his food.

With a bus full of schoolchildren inside that October day keeping the kitchen staff busy, all the Lamar women’s basketball coach could do was stare at a flyer on the drive-through window that had a picture of a young boy in a cowboy hat on it.

The flyer was for a benefit to help defray the cost of medical expenses for 3-year-old Lane Hoffpauir’s blood transfusion.

“I couldn’t stop looking at it,” Tidwell said. “I’m an old cowboy myself, so the hat really got to me. I knew I just had to help this kid, so I took down the number and called his mom.”

Lane, now 4, has had more than 100 blood transfusions in his life, battling beta thalassemia, an inherited blood disease in which the body makes an abnormal form of hemoglobin, the protein in red blood cells that carries oxygen, leading to destruction of red blood cells and anemia.

Tidwell and the Lady Cardinal basketball team decided to adopt Lane for the season. After adopting Lane, the basketball team sold different ticket packages, which included tickets to Saturday’s game and extras such as golf and gumbo, to help the fundraising efforts at his benefit on Oct. 17. The basketball team’s efforts raised almost $15,000 and so far the family has received almost $100,000 in donations to help with the cost of his bone marrow transplant.

Local family on a mission to save son

Courtesy by: wggb.com

WEST SPRINGFIELD, Mass. (WGGB) – When you meet Essa Khairi you can’t tell that beneath his playful spirit and infectious laugh, the 11-month-old suffers from a rare genetic disorder with potentially life-threatening complications. He was recently diagnosed with thalassemia major. His body produces dangerously low levels of hemoglobin, depriving his tissues of crucial oxygen.

To maintain his health, Essa is dependent on monthly blood transfusions. While effective, the high levels of iron he receives have potentially dangerous consequences for his heart and liver. The only cure for his condition is a bone marrow or cord blood transplant. Essa’s parents were discouraged to learn that there are very few people of Southeast Asian descent in the National Bone Marrow Registry. It is unlikely they will find a bone marrow donor so the Khairis have decided to proceed with a cord blood transplant.

Dr. Talal Khairi contacted a doctor at Duke University specializing in cord blood transplants. He was advised that while there are potential unrelated donors, Essa’s best chance of a match is a sibling. Essa’s parents are now preparing to have a third child in hopes that the umbilical cord blood will be a match for Essa. If not, they will proceed with looking for an unrelated cord blood donor.

While the Khairis are no longer actively looking for a bone marrow donor for their son, they are still hoping to organize a local bone marrow registry drive. They are calling on people of Southeast Asian descent to come forward and register, so that if someone is in need of a transplant there is a potential match waiting.

Dr. Khairi’s colleagues at Baystate Medical Center in Springfield are helping him organize the drive. Stay tuned for more information.

Umang organises blood donation camp to welcome

Courtesy by: himvani.com

The historic Ridge of Shimla witnessed a different New Year celebration on 1st January to welcome 2010. Defying severe cold wave, a large number of people gathered there to express their solidarity with the children with Thalassemia and other patients who need blood transfusion for mere survival. They exchanged greetings with each other and particularly with the children with Thalassemia and supported the cause of Thalassemia and Voluntary Blood Donation. As many as 80 persons including two visually impaired persons Anuroop Singh and Tara Chand, donated blood. This was their unique style to welcome New Year.

The voluntary blood donation camp was organized by Umang Foundation, a public welfare trust, which is dedicated to the social cause.  Narender Baragta while inaugurating the camp lauded the work of the Foundation. He said “There is no substitute of blood and every healthy person should donate blood after a gap of three months. There are a number of benefits of voluntary blood donation and the harm is nil.”

According to Ajai Srivastava, Chairman of Umang Foundation, it was the third blood donation camp of the trust in a series of four during severe cold season. There is always acute shortage of blood in the blood banks of Shimla during winters and to meet out the requirement of patients, this blood donation campaign of Umang Foundation was launched by Prof. Prem Kumar Dhumal, Chief Minister of Himachal Pradesh with Dr. Rajiv Bindal, Health Minister, on 11th December last at the Ridge. On that day a total of 50 units of blood were collected. The second camp was organized at the famous Christ church on the Ridge of Shimla to mark the Christmas, in collaboration with YMCA and the Church in which 40 persons came forward to donate blood. Now the fourth camp is scheduled for 14th January to celebrate Makar Sankranti, the famous Hindu festival of donations.

Ajai Srivastava said, “It was a good experience for all of us as blood donors on the first day of the year defying severe cold wave expressed their solidarity with the patients. They were made aware of the different aspects of voluntary blood donation and the genetic blood disorder called Thalassemia.” Many tourists from neighboring Punjab, Haryana and Chandigarh also donated blood. It is pertinent to mention that a large number of donors was from the age group of 18 to 28 years. They included girls also.

The children with Thalassemia Aditi, Arjun and Sahil etc. presented Rose to every donor to express their thanks and gratitude.

The camp was manned by many energetic and dedicated students of Himachal Pradesh University like Surender, Reshu Bhardwaj, Sheetal, Sunil, Reeta Dewan, Ranjana Chandel, Seema Parihar, Ritu Parihar, Vanita, Inder Kumar, Vandana etc. Bharti Kuthiala, Jaya Sharma and Rajni Sood, the trustees of Umang Foundation, thanked all the blood donors and the supporters of the cause.

Umang Foundation provided more than 700 units of blood to the blood banks of Shimla through various camps and emergency donors in the last calendar year. Apart from this, it did commendable work in creating public awareness about voluntary blood donation, Thalassemia and the rights of persons with disabilities.

21 More Rare Diseases Get Free Coverage

Courtesy by: koreatimes.co.kr

The government is set to expand its support for patients suffering from rare diseases, the Ministry for Health, Welfare and Family Affairs announced Monday.

The ministry said 21 more diseases will be added to its list of those covered by free medical care.

Beneficiaries will be patients whose family’s income is less than 4 million won per month, with their assets amounting to less than 200 million won.

One such affliction is thalassemia, an autosomal recessive blood disease that results in severe cases of anemia.

The patients usually need to receive blood transfusions and iron chelation therapy among other treatments, which can sometimes be risky, experts say.

The disease most often inflicts people in the Mediterranean region and parts of northern Africa, but in Korea, their number is estimated to be around a few hundred.

Other rare diseases included on the list are Kufs’ Disease, Nieman-Pick Disease and Krabbe Disease.

The Korea Center for Disease Control and Prevention said the new coverage will benefit some 7,000 people.

Currently, the National Health Insurance Corp. supports 28,900 patients suffering from 111 rare and hard-to-treat diseases.

“The government will cover not only expenses for treatment but provide them with pieces of medical equipment that are essential for walking, breathing and other aids to help them conduct their daily activities. Those with muscle disorders will also receive care by visiting nurses free of charge,” center official Ku Soo-kyeong said.

More information about rare diseases and governmental support for them is available at http://helpline.cdc.go.kr.

Notes: 6th National Thalassemia Conference & Workshops

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

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
2) IUGR
3) Premature Labor
4) Fetal Demise

Delivery:
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.

Blood Donation Drive Aims to Help Children with Thalassemia

Courtesy by: Daijiworld.com

Mumbai, Dec 14: Vile Parle MLA Krishna Hegde, in association with Jagrut (an NGO), organized a blood donation drive at Parle Tilak Vidyalay in Vile Parle (East), on Sunday December 13.

The blood donation drive was held in response to the needs of children afflicted with Thalassemia.

Thalassemia is a hereditary blood disorder where the patients need to undergo regular blood transfusions since their body cannot produce enough haemoglobin. It afflicts approximately one lac people in India and nearly 10,000 to 20,000 people are annually diagnosed with it.

The average life span of a person suffering from Thalassemia major is low since there is no cure other than a bone marrow transplant and regular blood transfusions. Awareness is the only tool to battle this disorder as it is passed on only if both parents are Thalassemic minors.

The blood donation drive generated a good response and over 250 bottles of blood were collected and handed over to the blood bank of J J Hospital.

“We have to create awareness about Thalassemia. A blood test for Thalassemia minor should be taken by couples before marriage to avert this disorder and ensure that their child is not afflicted by Thalassemia”, said Hegde.

“Looking at the tremendous response, we will be organizing another blood donation drive shortly”, said Narendra Hirani, president of Jagrut Group.

Kripashankar Singh, president of MRCC, also attended the blood donation drive. Appreciation certificates and mementos were distributed to all the donors.

Bid to hike voluntary blood donation

Courtesy by: timesofindia

JAIPUR: Rajasthan mainly depends upon replacement donors to meet blood requirement for transfusion. However efforts are being made at government

and individual levels to improve the participation of voluntary donors. The Swasthya Kalyan Blood Bank and Thalassemia Research Center released a reference guide for voluntary blood donation on Saturday.

The guide has specifically been targeted to the role of non-government organization. “A better understanding of the blood donation process and importance of voluntary donation will help these organisations to convince more people to come forward for this noble cause,” said Dr S S Agarwal. Doctors at the blood bank said under pressure of replacement blood donation at times even unsuitable people come forward to donate and practices like professional donors increase. As there are no way to produce blood, voluntary donation must be increased.