Friday 30 September 2011

Getting the message

The annual AMD Awareness Week was held from 24 – 30 September 2011.  Dr Amy Khor, Minister of State for Health, was Guest of Honour at the launch last Saturday morning.

MDS Singapore was one of the joint sponsors of the event, and as our contribution to the AMD Awareness exhibition, we had a computer with an extra-large screen monitor to introduce visitors to the online MDS sites – our website, blog and facebook page.   Some “got the message”, as we have been enjoying a larger volume of visitors since then!



MDS, together with the AMD Awareness Week organising committee, put together a very interesting afternoon session, with speakers covering several topics. These included “The Role of Vitamin Supplements in AMD”, “Coping with Vision Loss”,  “Advances in Management of AMD” and a “Healthy Cooking Demonstration”.  For some interesting and creative healthy recipes, check out the hospital website.


Narinder Sharma, CEO of AMD Alliance International, based in London, gave an interesting introduction to the organisation, as well as to the topic of coping with vision loss from a patient’s perspective. MDS is a member of the AMD Alliance International.  Those of you who would like further information on the Alliance and its activities, please visit their website.

Thursday 22 September 2011

China's bogus "stem cell therapies"


Hong Kong (Reuters) - Chinese hotel manager Hong Chun had trouble using chopsticks after a minor stroke and sought treatment at a large Shanghai hospital where doctors injected what they said were donor stem cells into his spinal cord and buttocks, according to his father and cousin.

Leaving hospital the next day, Hong, 27, fell so ill he had to be taken off the train and rushed to another hospital. But doctors were unable to save him and he was declared brain dead before dying a month later.

Desperate for help, patients with incurable diseases are admitting themselves into hospitals in China for "stem cell therapies" but experts say such treatments are backed by little or no scientific evidence and are at best experimental.

Some of these cases involve large general hospitals where patients pay thousands, even tens of thousands, of dollars for treatments that are advertised online. Patients have come away with little or no improvement and a number have died, according to patients, doctors and relatives of patients who spoke to Reuters.

Hong paid 30,000 yuan ($4,800) to the Chinese army's 455 PLA Hospital in Shanghai for the treatment last year, according to hospital receipts seen by Reuters.

His father, Hong Gensho, travelled to Shanghai to seek an explanation. But hospital administrators told him his son didn't die in their hospital, paid him 80,000 yuan and told him not to pursue the matter.

"I am miserable, it's like my son was worth only 80,000 yuan. It's not about money. Our human rights, our place in this society, are not respected. I am devastated. If he hadn't sought treatment, he would not have died," said the elder Hong, 61.

"I can't get my son back, but people must know about these stem cell therapies and no one must be deceived."


LACK OF SCIENTIFIC EVIDENCE
Experts have raised the alarm on patients turning up at clinics and hospitals in China, Mexico, India, Turkey, Russia and elsewhere for stem cell therapies that have not undergone clinical trials and which are not recognized as standard treatment.

Patients often pay fees of $20,000 and more for such therapies after exhausting conventional treatments.

"Stem cell tourism is regarded as ethically problematic because patients receive unproven therapies from untrustworthy sources," Dr David Resnik at the U.S. National Institute of Environmental Health Sciences and Zubin Master at the University of Alberta in Canada wrote in a paper published in the journal European Molecular Biology Organization.

Echoing the same concerns, Dr George Daley at the Harvard Stem Cell Institute and Harvard Medical School said he was swamped by enquiries from patients asking about therapies in China and Brazil for diseases from Alzheimer's to spinal cord injuries.


"What I'm talking about are the less legitimate treatments that have not even undergone clinical trials but are directly marketed therapies... We really have no idea how to use stem cells for these treatments," Daley told Reuters.

When contacted by Reuters, a director at the PLA 455 Hospital, who declined to be identified, said: "There are always good and bad outcomes. No therapy can guarantee success to everyone... Besides, you don't have a better alternative.

"As for patients dying, all deaths must be investigated. What caused the death? If our treatment caused the death, the patient (relatives) can seek redress. If it is a death caused by old age and sickness, then there is nothing I can say."

China's Ministry of Health did not respond to questions from Reuters on stem cell therapies being offered in the country.


VICTIMS ARE THOSE FACING DEATH
Suffering from late-stage liver cirrhosis caused by a lifelong hepatitis B virus infection, Fan Hongkun was led to believe her body would spontaneously grow a healthy liver once stem cells were transplanted.

"We saw the therapy advertised online and talked to the doctor over the phone. He said stem cells were like seeds, after being planted on a liver, they grow, divide and spread and finally form a healthy liver," said Fan's son, Zhou Junjie.

Fan, 63, was so convinced, she admitted herself into Beijing Military General Hospital, whose website still carries information on the stem cell therapies it offers.

"My mother said the PLA (Chinese army) doesn't lie. That's why she trusted them," said Zhou.

Doctors there took her off the drug lamivudine for four weeks to "prepare her for the stem cell therapy". But she fell into a coma before doctors could treat her.

Sold under the brand Epivir by GlaxoSmithKline Plc, lamivudine minimizes liver damage by blocking the hepatitis B virus from replicating. 

Fan's family learnt later from other doctors that she suffered a sudden surge of the virus after she stopped her medication, which pushed her into a coma and killed her.

According to documents seen by Reuters, her family sued the hospital, but the case was dismissed by a Chinese court.

When contacted, a doctor at the hospital, who declined to be identified, said the entire procedure to transplant stem cells into a patient's liver takes only a day.

"We extract the patient's bone marrow cells and isolate the stem cells, which are then inserted into the liver," said the doctor. "...We extract bone marrow cells in the morning and in the afternoon we inject them (stem cells) into the liver. Yes, all it takes is a day. Very fast."

Advertisements for these treatments remain on the hospital's website. In Ireland, many patients have returned from treatments abroad with no improvement, but they are less willing to talk.

"Virtually none will go on record to state they have been conned. This is mainly because many patients have serious immediate health concerns and they need to focus on that," Stephen Sullivan, chief scientific officer of the Irish Stem Cell Foundation, told Reuters.

"Patients are also reluctant to come forward as they are embarrassed at spending lots of money against professional medical advice. Some patients will even claim improvement when there is no measurable improvement."


POTENTIALLY POWERFUL
Researchers believe regenerative medicine will be a powerful form of therapy in the future. Stem cells are immature, master cells in the body that can grow into any kind of human cell or tissue. Scientists are exploring how to use them to treat a variety of diseases and disorders, including cancer, diabetes and injuries.

But for now, they stress that only one type of stem cell therapy has been proven to work. "Only bone marrow transplants for diseases such as leukemia, lymphoma are backed by solid evidence and are well-established clinical procedures. The others are not up to that level," said David Siu, clinical associate professor at the cardiology division of Hong Kong's Queen Mary Hospital.

"There is evidence that certain stem cells can grow into new tissue but do they provide a therapeutic effect? We don't have the evidence yet. Some are in clinical research."

For the conditions highlighted in this article - disability from strokes and liver cirrhosis - experts say there are no proven stem cell treatments.

In their paper, Resnik and Master said while most countries had rules governing research on people and medical malpractice, they did not apply directly to stem cell therapy. When doctors encounter strict regimes, they can simply move to other countries with more permissive legal environments.

Experimental stem cell therapies, however, may be legitimately offered to patients, but these must be carried out within the framework of clinical trials that are approved by regulatory boards that ensure ethical standards are met.

"When experimental stem cell therapy is used on patients, it is not performed on an ad-hoc basis but within the framework of a proper clinical trial prepared beforehand," Siu said. "It has to follow a rigorous methodology: what are the risks, what can and cannot be done? If the results are negative, what are the rescue and safety measures?"

Sullivan urged patients to be on the lookout for scams. Suspicious signs include being asked for large sums of money up front, being told there are no risks, and being offered no post-therapy care.

Patients should be told how they will be treated, what stem cells are used and where they come from. They should not accept any therapy based on hearsay, or without the treatment being validated at least in part by peer review, he said.

Resnik and Master urged stem cell scientists, who have control over stem cell lines, to help stop these scams by not releasing such materials to doctors or clinics if they cannot produce proof of conducting a genuine clinical trial.

"This would ensure that the stem cells and other materials are going to be used in the course of responsible biomedical research, a legally sanctioned clinical trial or in responsible medical innovation," they said.

Monday 12 September 2011

Avastin injections cause blindness

The New York Times
Aug 30, 2011
By Andrew Pollack

At least 16 people in two states have gotten severe eye infections, and some have been blinded, from injections of the drug Avastin, according to health authorities and to lawyers representing the patients.





The cancer drug Avastin has been used by some doctors to treat macular degeneration, an off-label application. The incidents, in Florida and Tennessee, demonstrate the risks associated with the money-saving practice of injecting Avastin into the eye to treat the wet form of age-related macular degeneration, a common cause of severe vision loss in the elderly. 

Click here to read the rest of this article.

Saturday 3 September 2011

AMD Awareness Week 2011

The annual Age-related Macular Degeneration Awareness Week is here again and MDS is happy to play our part in this nation-wide drive.

Date: Sept 24, 2011 (Sat)

Time: 1 - 3pm
Venue: Learning Centre, Khoo Teck Puat Hospital

The event is open to the public.

Here's the programme:

1 - 1.15pm.
Speaker: Mr Narinder Sharma, CEO of AMD Alliance International. 
Topic: Support system for patients with macular degeneration: Role of AMDAI

1.15 - 1.30pm
Speaker: Dr Ajeet Wagle, Consultant, OVS, KTPH
Topic: Advances in Management of AMD

1.35 - 1.45pm
Speaker: To be confirmed
Topic: My experience with AMD treatment - a patient's story

1.45 - 2pm
Speaker: Ms Zoe Soo, pharmacist, KTPH
Topic: Role of vitamin supplements in macular degeneration

2 - 2.15pm
Speaker: Dr Yang Wei Wen, psychologist, KTPH
Topic: Coping with vision loss

21.15 - 3pm
Speaker: Ms Gladys Wong, Nutrition and Dietetics, KTPH
Topic: Healthy Cooking Demonstration

Thursday 1 September 2011

Severe drop in quality of life

Macular degeneration patients suffer a severe drop in quality of life, not unlike those with cancer and kidney dialysis, said Dr Au Eong Kah Guan on Saturday in a talk with our members. Those with moderate age-related macular degeneration, for example, suffers a dip of 40 per cent in quality of life and it is similar to those who need regular kidney dialysis. 


Dr Au Eong, who is the advisor of Macular Degeneration Society (MDS), added that those with severe AMD suffer a drop of 63 per cent in quality of life, a rate on par to prostate cancer sufferers. Such heavy impact on the mental well-being of macular degeneration patients is the reason why it is important to have support groups like the MDS. 

Furthermore, it is critical for awareness to be drummed up so that patients can make better-informed choices which would help them tell of impending attacks, he observed in a talk titled Latest Trends in Management of Macular Degeneration at the Alexandra Hospital. 

Dr Au Eong shared that nutritional supplements can slow progress of AMD by up to 25 per cent, citing Omega-3 fatty acid as useful to those with macular degeneration. He added that authorities in Singapore could soon be carrying pictures of AMD sufferers on cigarette packs here, as smoking is a known threat to macular degeneration. 

He also spoke of the clinical trials comparing the effectiveness of Lucentis versus Avastin, stressing again that early diagnosis is often the key to reduce risk of vision loss. 

MDS held its annual general meeting after the talk, with its annual statement of account presented. MDS President Sharon Siddique gave a presentation of the society's events in the last year and secretary Peh Shing Huei and treasurer Kym Ong spoke about the online platforms of MDS. In particular, members were briefed on the society's venture into Facebook in the past year.