Spurious researchers try to evade "intrusion"

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Year 1996.

Place: Eye department of a leading hospital in Hyderabad

I had been to the twin cities to participate in an Ocular Immunology and Uveitis symposium at LV Prasad Eye Institute. I had heard of a group led by a Russian doctor who was engaged in research on retinitis pigmentosa. After having participated in the symposium, I had some spare time before I could board a train back to my home town. I decided to visit this hospital.

I met a young lady who was a receptionist there. The Russian doctor was not there, however an Indian associate was. I told the receptionist that I would like to meet the group that was engaged in research on RP. She moved in. I could hear the entire conversation from the waiting area.

Receptionist: Sir, an Ophthalmologist has come who wants to know more about your research on RP.

Doctor: What does he want to know....

R: About what are you doing in RP....

D: Tell him to go away....

R: .... (silence)....

D: OK, if you can't, send him in....

R: (c0mes out) Sir, he is calling you.

D: (with a conceited smile) Yes please, How may I help you?

I (MJ): Sir, I wish to know more about your work on RP, and if you recruit fellows interested in basic sciences and research...

D: No, in this hospital we don't.

MJ: (Since I had heard the entire earlier conversation) So there is no reason for me to stay any longer, right...?

D: Yes.

I left the room.

Later I understood the group was injecting an injection they called "encadem", an indigenous research products prepared from the eyes of owls! Owls tend to have good scotopic (night) vision but are nearly blind in photopic (day light) conditions. I felt, It would be interesting to understand the physiology of an owl's visison, but a crude extract.... in an injectable form..... how could it be helpful? It could elicit an immunological response but would not achieve any thing...

I was and am skeptical of the authenticity of the work. There is no published report by the group.

I understand the message in this post is clear. There has been an incidence when an RP patient sought my advise regarding a study protocol (cleared by institutional review committee). That indeed was a wise move!

No short cuts in medicine

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In a previous post, I mentioned the rigorous process a candidate drug is subjected to before it gets a nod by drug authorities.

India is currently seeing a burgeoning clinical research industry. The institutes that offer such courses claim that India is going to be a global hub for R & D in clinical research and thus there are going to be ample opportunities in clinical research.

However given the kind of country India has become, practically anything can be spurious here! So there are a few concerns I have:

(1) Is it possible that the great Indian hub becomes a hunting ground where foreign multinational companies bypass stringent policies adopted in their host nation(s)?

(2) Would it jeopardize the interests of Indian patients who may be lured by the "foreign component" in the tag?

There have been cases where Indian hospitals or doctors have indulged in dubious practices just to be in the lime light. I am sure many would recall, a doctor couple got their teenager son to carry out a Cesarean section on a pregnant lady just that they could announce him to be the youngest person to have accomplished the "feat". Currently another government hospital is in news for wrong reason: a team in a hospital based in Madurai, Tamilnadu, India carried out over a dozen breast surgeries (lumpectomy) for breast growth in a "record time" of three and half hours!

So if you are a patient with a chronic or incurable disease, don't jump and participate in a clinical trial. Seek advise.

More to follow....

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An eye opener for a glaucoma patient

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Mrs. Shreya Pathak (name changed) is a known patient of primary open angle glaucoma and high blood pressure. She had been on drugs and eye drops that managed both.

One fine day she decided to give a road side quack dealing with alternative drugs an opportunity to "handle" her.

The "doctor" (quack) gave a powdered substance in small packets made of paper to ingest. It tasted bitter. He claimed it came with his indigenous "research". The amount was fairly large to ingest as she recalled. Nevertheless, she had it or else it would mean "inadequate faith" in his ability.

Soon after she fainted on way to her house. her husband took her to a nearby doctor, who found her to have a very high blood pressure. He also advised some blood tests. Even the blood sugar had shot up like any thing! She was not a known diabetic but the random blood sugar was over 210 mg %.

The physician however succeeded in settling her in a day or two. However she still had significant pain and redness in eyes. So on day four she visited me.

Her intraocular pressure was 36 mm Hg in right eye and 38 mm Hg in left eye.

Clearly her glaucoma was uncontrolled as well.

What could have possible gone wrong?

I do not know for sure. However one possibility was administration of a very high dose of steroids.

Whatever it was, is history for Mrs. Pathak now: but it was, as she puts it an unforgettable day in her life. She vowed never to return to the quack and the likes ever again.

She visits my clinic regularly for routine eye check up.

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What do you need to know about drug research.

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As a patient of any chronic ailment you need to know that every medicine that reaches you comes through a strenuous process that begins in a lab where a molecule is "designed" to unlock a physiological mechanism in our body that has gone awry. A drug then enters animal studies or sometimes "in vitro" studies where the effect & side effects of the drug is seen in animals and in cultured human cells. Once through, comes a pilot study where the drug is assessed in a small group of healthy volunteer &/or selected patients. Multi centric trial involving several patients from multiple centres spread across countries or even continents comes next. This eliminates the bias the original inventor may have.

Repeatability of an observed effect or side effect is also determined through these trials. A safe dose that would ensure the desired action without any side effect is also worked out.

This whole procedures aleady consumes several yearsbefore the safety profile is worked out and many a times potentially promising therapies disappear before they reach you!

As a person belonging to the scientific community, I find it painful to hear that "modern drugs are bad since they have side effects!".

Medicine would not have advanced thus far if a rationalist approach had not been taken up since the begining. In contrast, all kind of alternative drugs remain mystic and occult. The knowledge pertaining to these also known to "a chosen few", some of them claiming to be "practicing" over generations! A gullible patient religiously takes them for months and years and the disease is either cured on its own (some diseases affect only certian age groups or are influenced by certian external conditions that may improve or disappear), or the patient perishes. In either case, it's advantage, "occult thearpist!".

What do you take for your ailment?

Something prescribed by a qualified doctor or a quack?

Beware.

To be continued.....

Do wonder drugs really exist?

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Alternative medicines thrive on "hopelessness"

Let us recall my brave HIV positive patient discussed in the following story:

http://rendezvous-doctorsblog.blogspot.com/2008/11/man-versus-virus-story-of-brave-aids.html

This lady had CMV retinitis an opportunistic infection of the eye. She had been seen by us in Chennai and was heading towards Trivandrum in 1995. She had heard of a "miraculous cure" that involved some heavy metals for HIV and AIDS that turns a patient negative on an ELISA test for the HIV virus.

I am not sure she planned to go to this chap out of firm conviction or simple helplessness. There was nothing she would loose by that trip, she must have thought.

My consultant told her, there was no way, one could be free from virus by using such wonder drugs. After she had left, he asked me if I could think of any way, one would have a negative ELISA test that has been positive earlier. We had no information if the lady implied a negative "western blot test" as well.

There was one way, I thought the result of ELISA could be skewed if a heavy metal could break the disulphide bridges in the immunoglobulin molecules that hold the heavy and light chains together!

We do not know what happened to the lady and her HIV tests subsequently. In all probabilities she is not alive today as she already had a full blown AIDS then.

But of course, had the miraculous drug worked the "doctor" (read quack) and his centre would be famous the world over by now!

These kind of terminally ill patients fall prey to all kind of gimmicks. Unlike the patients who have good medical prognosis (and who survive) these patients have been adequately "counselled" to understand their predicament. They would never sue the quack... nor would their relatives in case they do not survive themselves.

The duration of treatment of these ailments also tends to be prolonged. So there is an ample scope to mint money through them.

Did you hear of the wonder drugs prescribed by a quack (now in jail) in Rishikesh, India, who claimed to have found a cure for epilepsy?

He is behind bar now.

That is the logical conclusion of these stories, but we seldom get to hear this as there is no way to bring them to justice in most cases.

However a dental college owned by this thug still runs.

Moral of the story:

Suspect anything practised stealthily by people who make tall claims!

The original question: Do wonder drugs really exist?

Yes, chloroquine was once a wonder drug when initially discovered and when malaria was rampant.

Penicillin the first antibiotic to be discovered was since there were no effective ways to combat infections in the pre antibiotic era!

Rheumatoid arthritis: Can you really avoid deformities

A lady known to have Rheumatoid arthritis for 9 years came to me after an interval of four years. She had already developed a severe form of dry eye called "keratoconjunctivitis sicca" when last seen.

There had not been much difference but for the facial swelling and visible deformity of fingers.

When asked, she revealed that she was under care of a neurologist and in addition taking medicines prescribed by Baba Ramdev.

"Do you have relief with his medicines?", I asked.

After a thoughtful pause, she said, "yes", skepticism evident on her face.

"But as per records, you did not have these deformities in the small joints of fingers when I saw you last!, And you have been taking herbal medicines....".

"Yes, but I understand there are no side effects....".

"That's right, but there has not been any effect either!", I said.

I explained why it was essential to be under care of a rheumatologist, who would have prescribed disease modifying drugs, and also why she needed to go for physiotherapy to prevent other deformities.

The modern medicine as I said in a previous post are maligned for having side effects. But whatever is known about those side effects is accepted and published. So it is a very transparent .... .

I hope chronic patients would understand that. Instead of having a false sense of well being, let a good doctor be in charge of your problems!

When deciding your choice between drugs prescribed by a rheumatologist and those by someone advocating alternative medicines, please understand that the goal of treatment should not be mere control of pain but prevention of deformity as well.

Happy recovery!

Retinitis pigmentosa ( I ) : Visually challenged employ sighted ones

Nearly fifteen years ago I came across an elderly man with a young son who had an ocular ailment called "Retinitis pigmentosa (RP)". RP typically affects the eye sight in such a manner that night vision is affected , field of vision is gradually reduced and eventually reduced to a tunnel vision. In order to understand the problem of a patient with progressive RP, you are advised to role two papers in the form of a tunnel applied close to your eyes and then try to cross a busy road.

They had been to dozens of ophthalmologists in India and carried a heavy file weighing more than at least a kilogram of papers. It took me nearly 10 minutes to browse through their correspondence with doctors, clinics, those providing alternative medicines as well as those making tall claims about restoring vision (without even knowing about the ailment).

I was impressed with the spirit of the father who left no stone unturned. They even corresponded with " Ophthalmic clinics of North America" thinking them to be a clinic while in reality they are a publisher. I wish everyone could have that kind of never say die attitude.

Wherever I have gone, I found the patients of RP harbouring hopes despite often getting relatively poor attention in Ophthalmic clinics. Its a low priority area for amny since it does not fetch surgical revenue. Some of these have left their contact details so the I could tell them about any subsequent break through.

Among the remarkable patients of RP, were two sisters in mid thirties. I met Them around 7 years ago. They are no longer sighted, but instead of feeling dejected they emanate hope for others. Of course when they saw me in my clinic, they wanted a miracle, which I can't perform. Nevertheless they left on a positive note when I told them, they were better than many of us as they ran a school and thereby "employed" many sighted individuals like me. There school is somewhere in Almora, in the hills of Kumaon in Uttaranchal, India. I have been through the area, but never had a chance to locate it.

I know the future of kids at that school is in right hands.

Quadriplegic wins right to die

An Aussie quadriplegic has won his right to die in peace with dignity.

This chap has had two accidents that rendered him in his present shape, where he is on a wheel chair, unable to move any of his limbs.

Since Australia does not approve aided euthanasia, no body would assist him. This means he has been granted a permission or right to stop feeding.

In a way, the court has facilitated his cause by approving death by starvation. No body knows how much time it would take. This appears akin to "santhara" the Jain religious ritual of voluntary death by fasting, once the purpose of a life is thought to be over.

The unanswered question is: if in any case death by starvation is imminent now, why cant one go a step ahead and approve assisted euthanasia?

I am neither a supporter nor an opponent of euthanasia. That needs a larger debate. The purpose of this blog is to encourage people to say yes to life and not otherwise; nevertheless, the court verdict in this case made me ponder. What do you feel?

Disclaimer

The author does not support either santhara or euthanasia in its current form especially in a country like India, where one could have a forced - Santhara. Please refrain from judging what the authors views would be from this writing.

Chronic ailments: What is the role of alternative therapies ( I )

Hi,

Do alternative therapies really work?

Dr. Christian Bernard the South African cardiologist, who pioneered the first heart transplantation suffered from Rheumatoid arthritis. After this feat he was famous the world over. Concerned people across the continents poured in a lot of suggestions for his rheumatism. All were essentially “alternative medicines”, some claimed to be practiced “over generations” by the “prescriber”. I recall, keeping an onion in your pocket was one of them, as mentioned in a book by Dr. Bernard.

I intend to answer one basic question here: why does a person seek an alternative therapy.

One reason is, the mainstream therapy failed to live up to patients’ expectations.

The other reason is the chronicity of the disease itself.

Next is a “negative image” imparted to modern medicines: “they have too many side effects” any one using alternative medicine would tell you.

Modern medicines emerge after a rigorous multi step operation that includes trial on animals and human volunteers. Whatever side effects are encountered, are documented and admitted by the medical fraternity. They are there for everyone to see.

Another reason is a highly populist strategy adopted by those who practice alternative medicines. Do you come across a well groomed doctor claiming to cure azoospermia, inability father a child due to lack of sperms? This and many other ailments are claimed to be treated by the quacks! It is because of this populist measures that the likes of Baba Ramdev have survived in India, but strangely enough, you find such practitioners even in countries like the USA.

The last and a very important reason is people’s belief that miracles exist: something will appear out of no where and they will be cured. Gullibility out of despair!

I will follow up these views with more in subsequent posts. Dr Bernard was overwhelmed with the global concern for his ailment, but certainly did not practice these

Educate yourself before falling in for alternative therapies!

Text to Speech: Is that a potential solution to the academic pursuit of the visually challenged students?

Hi

Thanks Odiogo!

Thanks David for the information on the "Text to Speech" engines.

As an Ophthalmologist I get to meet several bright but visually challenged students; or, put it this way, I get an opportunity to diagnose their ailment. Their parents some time seek help or information on teaching aids. I have told them about the computers and the softwares that help the visually challenged: by providing a larger image of the text on the computer screen, by creating a sound every time a word is typed by the stroke of a key board.

Last such question was raised by the father of two siblings, a boy and a girl, both suffering from a variant of "heridomacular degeneration".

However, as I said in a previous post, the information regarding these does not trickle down in this country.

Any way, if the work is indeed in progress, on the TSS in India, it may be possible for a student to download the text from may be either CBSE's web site or any other site that may provide the course's contents. If this is pasted on a personal blog (a visually challenged student's personal notebook), it may be possible to hear them!

If someone from "the telecommunication and computer networking group (TeNeT)", IIT Madras, can comment on that possibility?

Manish

Myths in medicine: an anecdote

It was a sultry day in Rapar, a small taluka in far off Kuchch where I had been sent as an Ophthalmologist about fourteen years ago. A small town with a population of over 40,000 already had one ophthalmologist before I moved in as per my contract with my new employers in north Gujarat. I must have operated upon quite a few people there for cataract or glaucoma when this old chap consulted me. After an elaborate examination, I passed on my advise, “You have an operable cataract, & you better don’t delay the surgery, otherwise you may have a raised intraocular pressure. An old man of over fifty with more wrinkles over his forehead than those on his “kuchhi turban”, was immediately taken aback. It took me another ten minutes to cajole him into giving his consent for a cataract surgery that was eventually scheduled three days later.

I was a nervous beginner on the dee day. The guy was so fussy- any complication & he would be behind me, I thought. Careful I was & as Almighty might have wished it, we, patient & I landed safely. The surgery was followed up by regular visits as I had instructed him. Finally the day came when I was supposed to prescribe him glasses. I was delighted to procure a 6/6 vision- something akin to a score of 10 on gymnast’s bar.

I proudly explained it to him, “Kaka tamari nazar saari thai gai”
(You have had a great surgery, good enough to restore a perfect vision!).

Kaka gave a mystic smile, took out a peacock’s feather hidden somewhere in his turban & said “aa hatu naa, mare dhore saheb, etle”.

(It’s because of this peacock feather that I had been wearing all these days, sir!).

He happily pocketed a free sample of an eye drop, kept aside for him & left my consultation room. I was left aghast & enlightened that it was neither my surgical skill, nor the Almighty’s grace but the feather of national bird that restored his vision!