Leprosy, a misunderstood disease that has been curable for 40 years, still afflicts some 12 million people. NOVA looks at the tragedy of the disease that need not be.
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00:00Tonight on NOVA, this is Marit Bransma, she's 14 years old, a normal teenager except for
00:12one problem, Marit has a rare disease.
00:15In another time and place, her diagnosis would have meant deformity, fear and certain exile.
00:21But for Marit, things are different.
00:23Well, it doesn't bug me at all, I'm pretty used to it.
00:27I found out when I started getting a tan from lying in the sun and it was pretty noticeable.
00:32Thanks to discoveries at the Louisiana hospital where her father works, Marit can expect a
00:37complete recovery.
00:39Finally, leprosy can be cured.
00:48Major funding for NOVA is provided by this station and other public television stations
00:52nationwide.
00:55Additional funding was provided by the Johnson & Johnson family of companies, supplying health
01:00care products worldwide.
01:04And by Allied Signal, a technology leader in aerospace, electronics, automotive products
01:10and engineered materials.
01:25The Mississippi River.
01:43This ferry serves the isolated village of Carville, Louisiana.
01:47Here is the only United States hospital specializing in leprosy.
01:58Hilton Truesdale was born nearby.
02:00Now he is one of the hospital's permanent patients.
02:03I would say that the traumatic effect on the victim of the word leper, with all of its
02:15horrible connotations, is psychologically devastating.
02:22I know because I lived with it for a lifetime.
02:32Vin Bransma is a physical therapist at the Carville Hospital.
02:36Three months ago, his 14-year-old daughter Marit noticed a white patch on her right knee.
02:42Her father recognized the lighter skin as the first sign of leprosy.
02:45Well, it doesn't bug me at all.
02:49I'm pretty used to it.
02:51I found out when I started getting a tan from lying in the sun, and it was pretty noticeable.
02:57I asked my dad what it was, and he checked it, and they tested me for leprosy.
03:01It's a very, very early sign of the disease, and you couldn't possibly have diagnosed it
03:07any earlier than at this stage.
03:09My parents have worked with leprosy all their lives, so I'm quite used to it.
03:13I've been among leprosy patients my whole life, so it's really never given me.
03:17Now within maybe one year or maybe even two years, she's cured.
03:24Leprosy is not only completely curable, it's far less infectious than the common cold.
03:29So why are there still up to 15 million people worldwide with the disease?
03:34And why are some of Carville's patients still severely handicapped?
03:46You need to have some stuff.
03:48I don't have any more.
03:51Oh, yeah.
03:53Billy Burton is completely cured.
03:56It's one of leprosy's many paradoxes that his missing fingers are no sign of contagion
04:01or even the presence of disease.
04:03But these deformities cause fear, and it's fear and ignorance which continue to hinder
04:08the eradication of leprosy.
04:15Praise the Lord.
04:16Praise the Lord.
04:17I've got some.
04:18Put it here.
04:19Put it here.
04:22India has more victims than any other country, about four million.
04:27This village is in Tamil Nadu, the state with the greatest number of leprosy patients.
04:32There's a Tamil here.
04:35Do you know it?
04:36Yes.
04:37There's a Tamil here.
04:40A small white patch is often the first sign of leprosy bacteria in the skin.
04:45Is there a Tamil like this in your village?
04:48Yes, there is.
04:49Praise the Lord.
04:59Patients from all around come to the small village of Karagiri, where Christian missionaries
05:04run a leprosy research center.
05:07Praise the Lord.
05:16Every Easter, patients and staff gather for a special outdoor service.
05:24Jesus poured water into a basin and began to wash the disciples' feet.
05:31The director of the hospital is the Reverend Ernest Ritchie.
05:35The hospital at Karagiri is now a major training center for leprosy, and Ernest Ritchie is also
06:03the hospital's chief surgeon.
06:10Physicians come from all over the world to learn about the disease.
06:14Gopal Balakrishnan has come to Karagiri as an outpatient because he suspects a peculiar
06:19pain in his arm may have something to do with leprosy.
06:23He's saying that he has a feeling like ants crawling under his skin.
06:29That's typical of neuritis.
06:41Here is a very typical lesion.
06:45The color contrast is not very clear.
06:49The patches on Gopal's skin are not harmful.
06:52The real danger begins when the bacteria enter the surrounding nerves.
07:03This nerve has become very enlarged as a reaction to the presence of leprosy bacteria.
07:08There is no doubt about it that Gopal has leprosy.
07:12But there is no point in telling him that because it would give him a terrific shock.
07:16So we use the euphemism mycobacterial neurodermatosis.
07:21That means a nerve involvement affecting also the skin caused by the mycobacteria.
07:29That means a nerve involvement affecting also the skin caused by the mycobacteria.
07:37A very accurate scientific description.
07:39And the important thing is the element of nerve involvement in this condition.
07:46These tiny red stains are mycobacterium leprae, the bacteria which causes leprosy.
07:54Here red bacteria are invading faint blue strips of nerve tissue.
08:00Gopal is admitted for further investigation.
08:04The bacteria in his nerves are well established.
08:07So the nerves can no longer transmit sensory messages to his brain.
08:14The destruction of the nerve is the most serious development in the disease of leprosy.
08:22Look at this chap.
08:24Injury, injury, injury.
08:27A new injury, a crack.
08:30And all these are due probably to loss of sensory nerves.
08:37Dr. Fritsche uses a pin to test if any sensation remains in the hands.
08:50Both hands have lost sensation completely and that has resulted in this.
08:57Gopal's badly cut hands are the result of harvesting sugarcane.
09:05Because these injuries don't hurt him, he continued working even when dirt heavily infected the wounds.
09:14Now you and I would have felt pain preceding that.
09:17But because of loss of pain, he has got these injuries and now he is not going to care for them again because he has lost his pain.
09:24It's not mycobacterium lepra that's doing this.
09:27It's the destruction of the nerve.
09:29Let's see his foot.
09:31He's also lost pain sensation in his foot.
09:34There is an ulcer which you can see from this discharge there.
09:38And another one which has already cost him his big toe.
09:43The problem in leprosy is that in a subsistence economy, you have to work if you want to eat.
09:53One day's rest in bed means one day no food.
09:56And that is the tragedy of leprosy.
09:58It is not M. leprae that causes this, but loss of sensation.
10:06In India, many leprosy patients are manual laborers.
10:09Their occupations, coupled with a lack of footwear, make them prone to injury.
10:14The injuries get a secondary infection and this leads to tissue destruction and the eventual loss of fingers and toes.
10:24At Carville Hospital in Louisiana, Dr. Paul Brand.
10:30We don't just realize, most of us, how much constantly we're depending on pain.
10:35It isn't our intelligent thought, I will not damage myself.
10:39It is the fact that we get quick feedback, unpleasant feedback, that tells us that we mustn't go ahead because it's hurting.
10:46So there's that factor.
10:48But even more important than that is the fact that a person's sense of who he is and what parts belong to him is conditioned by pain.
10:59And once a person has lost sensation in his hands or feet, even his eyes, he no longer feels that it's part of him.
11:08It feels as if he's perhaps got an instrument at the end of his arm.
11:12And instruments are expendable.
11:15Max Gonzalez is a patient at Carville.
11:18I believe the pain is very important, very important.
11:24Because without pain, you have the tendency to forget that you have hands.
11:36You have to constantly remind yourself about that, the fact that you don't have sensation, in order to protect yourself, protect your hands.
11:49For example, the cigarette.
11:52You have to be aware of smoking.
11:57And to throw it in time, you know, before you get burned or something like that.
12:06And so it is that loss of body image, it's the loss of the sense of the importance of who you are and what you are, that occurs in this disease,
12:15that makes it almost easy and natural for a person to do destructive things.
12:21I think sometimes they almost dislike themselves.
12:24Once a hand has become deformed, it's something that they'd rather, subconsciously, almost rather be rid of.
12:31Leprosy bacteria also destroys the nerves which control muscles in fingers and eyes.
12:37We've got a contact lens on there now, and a stitch in your lid to help protect that cornea.
12:44When eye muscles are paralyzed, eyelids cannot be closed.
12:48Without protection, eyes are easily injured, and blindness is the ultimate handicap for leprosy patients.
12:57Paul Brand's wife, Margaret.
13:04Well, if you think of the normal blind, the normal, I mean, in the ordinary way, when somebody goes blind,
13:10they begin to use their fingers, they become super sensitive,
13:14and they can replace much of the information that they would get from their eyes by their fingertips and their ears.
13:22But our patients, if they're going to go blind also, don't have that option,
13:27and their life becomes meaningless.
13:30They feel totally cut off.
13:32They have no way to earn a living.
13:35Their rehabilitation is almost impossible.
13:38They feel really desperate.
13:43Leprosy patients who become blind can be taught to use sound to replace loss of sight and sensation.
13:50One area where sensation remains intact is inside the mouth.
13:54This tells them which end of the spoon to use.
14:01Handicaps caused by muscle paralysis can sometimes be repaired surgically if caught early enough.
14:07Many of the procedures were pioneered by Dr. Paul Brand.
14:13When the ulnar nerve is destroyed, a normal hand like this becomes a claw hand.
14:19The patient can't fully open the fingers.
14:22That means that whereas a normal hand can grasp a tumbler like this and use the whole surface of the hand,
14:29which you can see is just faintly blanched as I grip it firmly,
14:33with a claw hand, you use only the fingertips,
14:37and that results in an absolutely dead white fingertip which is blanched by the pressure.
14:43And if I kept on holding like this, supposing this was the handle of a hammer,
14:47and I was working with it, I might destroy my fingertips completely.
14:52Now, Mrs. Smith here has her ulnar nerves paralyzed in both arms.
14:57And here you have the preoperative hand with a typical claw deformity.
15:04Just open and shut your hand. There we go.
15:06And if she tries to hold something, grab that, she can't get her fingers around it.
15:13That's really the problem.
15:16And this hand was just the same, but just four weeks ago she had an operation.
15:23And, okay, here she is just out of the plaster cast.
15:29And you see her hands already are assuming a natural posture.
15:33What we did was to find a good muscle up here in the forearm,
15:38and we cut the tendon like a piece of string, cut it here,
15:42pulled the tendon out through this incision,
15:45and then we tunneled it right around under the skin to the front of the forearm,
15:50to this little incision here, where we extended it with a free graft from her leg,
15:55and we took it through the palm of her hand with a separate branch to each one of her fingers.
16:00And now when she contracts this muscle, these fingers bend like that.
16:05That's right.
16:07Now she can probably get hold of this one. Can you do that?
16:12There you go.
16:15Good.
16:17And now the beauty of it is that she isn't going to need to worry so much about her fingertip damage
16:24because the whole of her hand will share the pressure of her grasp.
16:29The word leprosy is found in the Bible.
16:32Translators chose leprosy as a general term to describe any person or object
16:37that was morally or physically unclean.
16:42Most authorities agree that the condition referred to as leprosy in the Bible
16:46has absolutely nothing to do with the disease as it is known today,
16:50and in the United States, leprosy is now officially called Hansen's disease,
16:54after the Norwegian scientist who discovered the bacterium in 1873.
17:03Leprosy treatment has only recently become a medical concern.
17:07For hundreds of years, leprosy was a religious matter.
17:11In the Middle Ages, the priest made the diagnosis,
17:14and permanent segregation was the only treatment he could prescribe.
17:18There was no cure.
17:20Just over a century ago, the Church took the initiative again.
17:24It was the first organization to provide any help for sufferers abroad.
17:28Cardinal Léger of Montreal.
17:32If I tell to a congregation the word leprosy, leper, nobody understands.
17:40But I understand, because I live with the leper.
17:44Leprosy is a question of experience.
17:47You can read a hundred books on leprosy.
17:51If you never saw him, if you never lived with them,
17:56in their reserve, in their camps,
18:00they were like in a prison, but that prison was a living cemetery.
18:06They knew that they were entering there,
18:09and that they would never go back into society.
18:13So, that's why the first missionaries,
18:17they understood, you see,
18:19that the only hope that could be given to them
18:24was the hope of eternal life.
18:27Even when Elton Truesdale first arrived at Carville, Louisiana in 1914,
18:32leprosy patients were treated more like criminals
18:35than innocent victims of an untreatable disease.
18:40Well, when I came in in 1914,
18:43the place was more like a concentration camp than a hospital.
18:48We were not allowed to go out at all, even when my mother died.
18:52I was not able to go to her funeral.
18:56It was strict isolation.
18:58Once you got in there, that was the end.
19:01Two patients who did manage to escape
19:04were Harry Martin and his girlfriend Betty.
19:07Well, it was 1933, and Betty and I were both in perfect condition,
19:12and so we decided to leave,
19:14but the only way we could leave would be through the hole in the fence.
19:17So, we had our fathers came up.
19:19Her father came, and my father came at night, blinked the light.
19:24Through the hole, we got in the car and headed for New Orleans.
19:27Fifty years later, they still don't wish to be recognized.
19:30They returned to Carville when Harry's condition deteriorated.
19:34Six years had elapsed, but they were punished for leaving without permission.
19:38Well, in those days, when you came back, they'd put you in jail,
19:42and Betty went to the detention house,
19:46and I went to jail for 30 days.
19:50Later, conditions in Carville improved so much
19:53that Elton Truesdale decided to return there for his retirement,
19:57much to the surprise of one of his tenants.
20:00I remember one of my tenants.
20:03We were very close. I wasn't in love with her,
20:05but we were very close friends, a lady,
20:09and we were together almost all the time because she was one of my tenants,
20:14be in my apartment, have coffee with me,
20:17eat with me, and drink with me.
20:19And when I retired, she said,
20:21Well, where are you going?
20:23I said, I'm going to Carville.
20:25And she looked astonished.
20:27She says, Carville?
20:29I said, yes, that's right.
20:30She says, ain't that why they have leprosy?
20:32I said, yeah, that's right.
20:33I said, do you have leprosy?
20:35I said, yep, that's right.
20:37She looked at me so astonished,
20:39and she says, well, I guess it's too late to be afraid now.
20:44I said, I guess it is.
20:47Not far from Carville is Elton Truesdale's home.
20:51The Truesdale family lived in one of those isolated pockets of leprosy
20:54that exist in Louisiana
20:56and which contribute to the 40 or so native-born American cases
20:59which turn up each year.
21:02Leprosy still occurs naturally in the southern United States and Hawaii.
21:07No one really understands why,
21:09but poor living conditions and genetic factors are theories.
21:14In these parts of the world, there is little chance of catching leprosy.
21:19Here, leprosy is widespread.
21:21Everyone is at risk.
21:23In between, there are pockets of the disease,
21:26and the numbers are small.
21:28But leprosy was not always a disease of tropical Africa,
21:31Asia, South America, and the western Pacific.
21:36As recently as the mid-19th century,
21:39over 7% of the population of Bergen in Norway had leprosy.
21:44Today, no one.
21:50Most of Carville's 300 patients
21:52and the 6,000 others living in the United States
21:55are recent immigrants or refugees
21:57who contracted the disease outside the country.
22:05If they need to be admitted to this hospital
22:07run by the public health service, there are compensations.
22:10Treatment is free, and the hospital has excellent facilities.
22:16With early diagnosis, leprosy is curable,
22:19with no fear of deformities.
22:21Last year, 400 cases were diagnosed in the U.S.
22:25Unfortunately, it usually takes four years
22:28before patients are correctly diagnosed and referred to Carville.
22:32This is because of ignorance and fear among doctors.
22:37Dr. Paul Brand.
22:38The greatest number of physicians
22:40presented with a case of leprosy will not recognize it as such.
22:43It doesn't have a proper place in the medical curriculum.
22:46Even in a country like India,
22:48where the disease is one of the commonest in the country,
22:51the medical schools don't give enough time to teaching it.
22:54And I think the doctors really themselves
22:56are not too keen to change this.
22:58They'd rather not have leprosy patients amongst their clientele.
23:03In the area of South India where Gopal lives,
23:06probably everyone has been exposed to leprosy bacteria.
23:09But in Gopal's family,
23:11he was the only one to actually get the disease.
23:14A very small percentage of the population,
23:17less than 1 in 50, contracts leprosy.
23:20It is the least contagious of the infectious diseases.
23:23In fact, most people are naturally immune to the infection
23:26and quickly kill off the bacteria before they do any harm.
23:29Only very rarely do people working with leprosy catch the disease.
23:41But in those who do develop leprosy,
23:43there must be something wrong with their defense against the bacteria.
23:47In Gopal's case, his immune system takes a while to get going.
23:51Here's how it happens.
23:54Front-line defense cells, called macrophages,
23:57engulf the leprosy bacteria.
24:06Parts of the bacteria appear on the surface of the macrophage,
24:10where they are recognized by white blood cells called T-cells.
24:14Once the T-cell locks on,
24:16it instructs the macrophage to completely digest the bacteria.
24:21It also recruits reinforcements.
24:24For most people, this initial assault is enough.
24:27But if it fails, bacteria enter the nerves.
24:30And when the immune response takes place,
24:33the destructive chemicals that digest bacteria
24:36destroy the nerve fibers as well.
24:41The inflammation and swelling that results from this battle
24:44causes further damage to the fibers
24:46as pressure builds up inside the protective sheath of the nerve.
24:51One method of reducing the pressure inside Gopal's nerve
24:54is surgery.
24:55Dr. Fritsche.
24:56Now, here I am slitting the sheath.
25:00Paradoxically, Gopal's nerve damage occurs just when he is improving.
25:04His immune system is working more actively than necessary
25:08and begins to attack healthy tissue.
25:13There are two main types of leprosy.
25:17Like Gopal, most victims, over 80%, have tuberculoid leprosy.
25:21It's non-infectious because his immune system, though defective,
25:25does keep down the number of bacteria in his body.
25:28But his neighbor, Chandran Kanayan,
25:30has infectious or lepromatous leprosy.
25:33With little or no immunity, his body is full of bacteria,
25:36which he is constantly discharging from his nose.
25:39Ironically, he feels perfectly fit.
25:42In advanced cases of lepromatous leprosy,
25:45the huge number of bacteria stretch the skin into nodules.
25:48The same thing happens in the nerves, which are eventually destroyed.
25:54It's assumed that people inhale bacteria
25:57directly from infectious cases like Chandran,
26:00although infection through cuts in the skin or by insects can't be ruled out.
26:04No one really knows.
26:06But there is no doubt that there are millions of bacteria
26:09multiplying in the nodules in his ear.
26:12The bacteria from Chandran's ear are identical to Gopal's.
26:16So the reason Chandran has so many more in his body
26:19must be due to a more serious defect in his immune system.
26:23Although his defense cells, the macrophages, engulf the bacteria,
26:27the T-cells do not recognize them as harmful
26:31and order their destruction.
26:35In fact, the inside of the macrophage provides a protective environment
26:39which allows the bacteria to multiply unhindered.
26:43Eventually, the cell ruptures, spreading bacteria around the body.
26:56Chandran and Gopal would be cured if they had been treated.
27:01Chandran and Gopal would be cured if they had been diagnosed early.
27:05Because in 1950, a scientist at Carville discovered a drug called promine,
27:11which for the first time dramatically cured leprosy.
27:15Promine had been used to treat tuberculosis in guinea pigs,
27:19and Carville's director, Dr. Guy Faget,
27:22decided to see if it would also work on the somewhat similar leprosy bacteria.
27:27Soon afterwards, a much cheaper version of promine, called Dapsone,
27:31became widely available,
27:33and both Gopal and Chandran are now being treated with this antibacterial drug.
27:41The discovery of a dramatic cure produced a wave of optimism
27:45that leprosy could be wiped out in a decade or two.
27:53Armed with mountains of Dapsone,
27:55the government of India launched a massive national leprosy control program in 1955.
28:02Mobile clinics brought treatment to the villages.
28:05But over 30 years later, there are still 4 million patients in India,
28:09and about 300,000 new cases are detected each year.
28:14One of the most serious problems facing India's eradication program
28:18is the increasing evidence that more and more patients
28:21are not responding to treatment with Dapsone.
28:25Dapsone kills bacteria very slowly,
28:27and treatment in many cases must continue for life.
28:33Rathanam Vanji Samuel has been on Dapsone treatment for 20 years,
28:37but there are signs that his condition is deteriorating.
28:44In order to check if this problem is being caused by resistance to Dapsone,
28:48bacteria are collected from a patch on his back.
28:55They will be sent to Karagiri Hospital Laboratory for further investigation,
29:00but it will be six months before these test results are available.
29:09Other possible reasons for failure are checked by paramedical workers
29:13making a surprise visit to Rathanam's home
29:15to see if he is taking his Dapsone tablets regularly.
29:22If he doesn't take his pills every day,
29:24the bacteria will learn to live with Dapsone more quickly.
29:29The lifelong treatment and slow disappearance of symptoms
29:32often discourage patients from taking their pills.
29:35Less than 50% of patients take their Dapsone regularly.
29:55One, two, three, four, five. Correct.
29:57See, according to the tablets, he is correct.
30:00But there is another way of testing.
30:04These tablet counts don't always provide conclusive evidence,
30:08as patients sometimes disguise the fact that they have not been taking their medicine.
30:13This is actually to see whether he has really taken the tablet or not.
30:17The tablet count gives an information that he has taken,
30:21but how to prove?
30:22Scientific proof to see whether he has swallowed the tablet.
30:26The scientific proof requires a sample of Rathanam's urine.
30:38Drops of urine are placed on specially prepared paper.
30:41You can see the outer color, yellow, that is urea.
30:45Inside, if he has taken Dapsone tablets, it should have been orange.
30:49There is no orange.
30:51That shows he has not taken the tablets.
31:03Six months ago, these mice were injected with Rathanam's leprosy bacteria,
31:07and Dapsone was mixed into their daily diet.
31:10Today, the bacteria will be collected from these mice.
31:14Under a microscope, there are many more bacteria than originally injected.
31:20This confirms that they have adapted and are no longer being killed by Dapsone.
31:25To combat this problem of Dapsone resistance,
31:28two additional drugs are now given to patients.
31:32The World Health Organization recommends multiple drug therapy
31:35because it is extremely unlikely that the bacteria will grow resistant to all three drugs.
31:40The new drugs, the antibiotic rifampicin and clofazamine,
31:44also kill the bacteria more quickly.
31:48So, treatment can sometimes be reduced to only six months.
31:56But treating patients successfully requires more than just dishing out powerful drugs.
32:02Dr. Paul Brand.
32:04I'm excited about the new drugs.
32:05I think that it's very important to prevent drug resistance.
32:10But I think that a lot of people are being too optimistic about it.
32:13First of all, let's remember that for all these years, 40 years,
32:17we've had an effective drug,
32:19and still we haven't significantly reduced the world load of leprosy.
32:24And the reason for that, I think, is that we have not been able to reduce the world load of leprosy.
32:30And the reason for that, I think, is not so much in the inadequacy of the drug,
32:36it's in the approach of all the agencies that have been controlling the mass treatment campaigns.
32:43And I believe the key point is that they haven't looked at it from the point of view of the patient.
32:49See, as far as physicians and statisticians and epidemiologists are concerned,
32:53leprosy is how many bacilli there are in the body.
32:56And if you can do a bacterial count and see that it's being reduced, they say this is success.
33:01The patient doesn't look at that at all. He doesn't even know about it.
33:05He looks at his deformities, at the hands and feet and the facial deformities that result in the stigma and his ostracism.
33:13And when the doctor says they're getting better, and they see that their deformities are getting worse,
33:18they just don't cooperate. They don't feel that the doctor knows his job.
33:23And we have simply got to improve that relationship,
33:26that confidence between the patient and the doctor before we're going to get success.
33:30The patient has got to realize that he is indeed getting better,
33:34and above all, perhaps, we've got to help him to prevent the deformities.
33:43One possible solution to the shortcomings of the present method of controlling leprosy would be to develop a vaccine.
33:53Such a vaccine should protect individuals against infectious cases,
33:57which are believed to be the only reservoir of bacteria.
34:03It could be given in the same way as polio vaccine, as a matter of course.
34:13In general, successful vaccines consist of a small number of killed or weakened organisms,
34:19which trigger the immune system to recognize and repel any subsequent infection.
34:25In India and elsewhere, scientists are attempting to create a vaccine for leprosy.
34:30But progress has been slow.
34:33Although the leprosy bacterium was identified over a century ago,
34:37no one has been able to grow it successfully in a test tube.
34:42The only source of bacteria was in the nodules of infectious patients,
34:46and they clearly could not provide enough bacteria for any large-scale tests.
34:54But a way of producing greater quantities of bacteria came from an unexpected quarter.
35:03Researchers at Carville discovered that the local nine-banded armadillo
35:07could be infected with human leprosy bacteria.
35:16In three years, the multiplied bacteria from this anesthetized armadillo
35:20will be collected and then killed with heat.
35:23Vaccine derived from armadillos is very expensive to process, about $50 a shot.
35:31Also, armadillos don't breed in captivity, and the number that can be trapped is limited.
35:36These factors inhibit the future mass production of a vaccine containing dead leprosy bacteria.
35:42Dr. Paul Brand.
35:45I think that work on a vaccine has got to move ahead in high gear.
35:50We've got to put all the resources we can into it. It's very, very important.
35:53But I'm almost equally insistent that actual leprosy workers and physicians in the field
36:00combating leprosy at this present time forget about it.
36:03I think there's a real danger that this idea of a vaccine just around the corner
36:07is making people back off the need to develop new drugs, new direct therapeutic measures.
36:14Because I think that it's going to be a long time before the vaccine is available.
36:19And there is also a question about how effective a vaccine containing dead organisms would be.
36:25So at MIT's Whitehead Institute, genetic engineers are attacking the vaccine problem
36:30at the molecular level.
36:32Dr. Richard Young.
36:34Our objective is to identify the key molecules that are involved in stimulating the appropriate immune response
36:41and use those as the basis for a molecular vaccine.
36:47For the appropriate immune response to occur, macrophage cells must first ingest bacteria.
36:56The bacteria are broken into bits and a few molecules appear on the surface.
37:01Scientists call them key antigens.
37:03Although key antigens can be recognized by immune system weapons called antibodies,
37:08they're ineffective.
37:10In leprosy, it is the white blood cells, called T cells,
37:14that are responsible for instructing macrophages to kill the bacteria.
37:21They also recruit other T cells to join in the defense.
37:26But out of the thousands of submicroscopic molecules that make up a leprosy bacteria,
37:32how is it possible for researchers to identify just those key antigen molecules
37:37which actually trigger defense cells into eliminating the bacteria from the body?
37:42New genetic engineering techniques are enabling Dr. Young and his colleagues to tackle this problem.
37:48The first task was to break the bacteria's DNA into four million bits.
37:54Contained in these fragments are all the genes that code for different parts of the leprosy bacteria,
37:59including the genes which make the key antigens.
38:05But single genes are too small to be seen.
38:10So viruses are used to carry the genes, but not to kill them.
38:15So viruses are used to carry the genes, one at a time, into laboratory bacteria,
38:20which can be tricked into accepting the leprosy genes as their own.
38:31Then, as the bacteria divide, they copy not only their own genes, but the extra leprosy gene as well.
38:44Thousands of colonies are grown in the laboratory,
38:50each containing about 20,000 virus-infected bacteria.
38:57Eventually, the bacteria burst, releasing thousands of molecules,
39:01including those programmed by the leprosy genes.
39:04But where on this plate are the critical key antigen molecules?
39:08The problem we face is finding the gene that produces the key antigen that stimulates the immune response.
39:17The antigen molecules are sticky,
39:21and we can attach them to a piece of filter paper that we overlay on the plate.
39:31Although we can't see the antigens,
39:34we can look for them with an antibody that we already know attaches to a key leprosy antigen.
39:40If the antibody that we've poured on does find this antigen on the filter,
39:44it will bind to it, and with a simple laboratory trick, it will change color.
39:52The spot that changes color reflects a spot on the plate where a leprosy gene
39:57is producing the key antigen that stimulates the immune response.
40:02This is the original filter that was terribly exciting to see,
40:06and although you can't see it,
40:08there is a spot here which represents the first key antigen from leprosy that we isolated.
40:15What is even more exciting is that the white blood cells recognize this antigen,
40:21and it is those cells that are ultimately important for eliminating leprosy.
40:27Leprosy's long incubation period means that this baby will be a teenager
40:31before human trials can prove that this new approach is going to work.
40:37But if it does, children around the world will benefit from a low-cost molecular vaccine
40:42in which key antigens are the main ingredient.
40:46The way that we're currently attacking leprosy is largely with drugs,
40:52and the history of that attack has been the appearance of drug resistance,
40:57and I think it's a fair assumption that the future of that kind of attack
41:01will be increased drug resistance.
41:04I think what we'd really like to focus on is eradication,
41:08and if we could develop a vaccine that worked,
41:11then it's possible, some of us believe, to eradicate leprosy in perhaps a generation.
41:21Today, only one out of five leprosy cases worldwide actually receives treatment.
41:26A cheap one-shot vaccine given in infancy
41:29would be the most effective method of controlling the disease.
41:33But in a city like Bombay, even a vaccine may not be enough to eradicate leprosy.
41:40Every day, hundreds of rural families flock here in the hope of finding a better life.
41:46Already, about half of Bombay's nine million inhabitants
41:49live in extremely overcrowded slums.
41:54More slums are spreading around the city all the time.
41:57Similar conditions existed in Europe when leprosy was widespread there.
42:01There was no cure then, yet the disease eventually disappeared.
42:06Improved hygiene, housing and nutrition were probably the key factors.
42:11Leprosy is now well established in Bombay's slums.
42:14It is a serious urban problem.
42:21In the northern suburbs, the Bombay Leprosy Project is responsible for leprosy control.
42:26Early on, they realized that the mass media was not being used to reach victims.
42:38For example, this ten-year-old film is one of only a couple available for public education.
42:43Despite the fact that movies are India's favorite pastime.
42:56A tiny skin patch.
42:59He had never noticed it before.
43:03Maybe rash or something.
43:07The lady doesn't think much of it, but he does not want to take chances.
43:13So, when the doctor expresses her doubt that the patch might be a symptom of leprosy, it shocks the couple.
43:31How can it be?
43:33Is not leprosy hereditary? No.
43:37Does it not run in the family for generations? No.
43:42Probably no disease has more misconceptions surrounding its cause than leprosy.
43:47Oh, leprosy. No, absolutely not. I have absolutely no idea.
43:53Could it be through the water?
43:55I feel that it is hereditary.
43:58My accountant had an experience that he had an intercourse with a woman and he was affected with leprosy by the private parts of her body.
44:08It's caused by the environment around and the bad food.
44:12In Pakistan they do a lot of it.
44:15But what is it called? We don't know.
44:18Do you have any idea what causes it?
44:21Just bad luck, I think.
44:24It's a disease of the nerves, isn't it?
44:27Leprosy, bacilli or something. It's a scientific term.
44:32It comes through that because it is a contagious disease.
44:36Leprosy is a bacillus. Mycobacterium leprae.
44:43The Bombay Leprosy Project moved into mass media education in collaboration with Indian Railways.
44:52Posters were placed in all compartments so they were seen by hundreds of thousands of commuters.
45:00A special screening booth was set up on the station platform.
45:07They discovered that people who came forward voluntarily for treatment seemed more motivated to take pills than those detected in house-to-house surveys.
45:16But this campaign was an isolated event.
45:20After a week the booth was dismantled and the posters on the trains and buses were eventually removed for lack of money.
45:28Traditionally money is only spent on treatment and detection surveys, not on public education.
45:34Not surprisingly these surveys show that there is much more leprosy in the slums than in the expensive high-rise neighborhoods.
45:46Within the slum population the single biggest source of infectious lepromatous leprosy is men.
45:53So Bombay Leprosy Project decided to concentrate its detection efforts on this group.
45:59Factory surveys are an efficient way of reaching these infectious male cases.
46:07These checkups are euphemistically described as skin camps.
46:12Two infectious cases were discovered here.
46:18To protect their jobs their identities are kept confidential.
46:23Leprosy can take seven years to incubate.
46:25The disease is frequently diagnosed at a stage when infectious cases like this man have already been discharging bacteria for months or even years.
46:35There is no practical test for leprosy before the symptoms appear.
46:42Two days later paramedics visit the homes of the two factory workers to check if any of their family or close contacts have leprosy.
46:51One son is a suspected early case.
46:56The family is told that if father and son take their drugs regularly the disease will soon become non-infectious and both can be treated as outpatients at the local hospital.
47:13Leprosy in India has traditionally been treated in special hospitals.
47:18Bombay's Sir JJ Hospital is one of a very few general hospitals willing to admit leprosy patients.
47:25Outpatients and those needing surgery are freely admitted to the hospital and its plastic surgery wards.
47:40But fear still often causes opposition to such integration.
47:45A week ago all these beds were occupied by leprosy patients.
47:50Then objections from staff and patients forced the dermatology department to empty this ward except for this man who has been relegated to a small leprosy only room.
48:07Patients at Sir JJ Hospital face less stigma than if referred to an old style leprosarium like Mr. Ackworth's hospital in central Bombay.
48:20Ackworth was established in 1894 as a result of the Lepers Act.
48:25This act authorized the permanent incarceration of lepers found on the street and it actually remained on the statute book until 1984.
48:37Before the discovery of the cure for leprosy strict segregation was the only method of dealing with patients.
48:44Most of Ackworth's 380 inmates are now completely dependent on the institution.
48:49Although cured many do not wish to be discharged.
49:13Those that do leave frequently get no further than a life of begging just outside the hospital gate.
49:19Others leave Ackworth to live in one of the leprosy colonies that have sprung up in the northern suburbs of Bombay.
49:25This leprosy colony is a self-contained community with its own elected leader.
49:55It is an extremely clean and well organized village.
50:14Ex-patients can lead a life that is close to normal.
50:18But like a number of colonies it maintains itself by bootlegging the illicit alcohol it distills.
50:26Drinking the liquor can be hazardous.
50:31Yet production has not so far been disrupted by raids from the police.
50:35Possibly because the still is right in the center of the colony.
50:55Back in Ackworth the majority of the long-term patients will never return to their family and community or have a job.
51:25Ackworth's research officer is Dr. S.S. Pandya.
51:29The Ackworth hospital represents the old style of thinking about leprosy.
51:35They thought that the leprosy patients should be locked up and segregated.
51:40So that's the sort of atmosphere that was existing in this hospital still very, very recently.
51:47Where you see a lot of disabled people who have been disowned by their families.
51:50And who are totally dependent on public support for their livelihood.
51:56So that's not really rehabilitation. It's more like dehabilitation.
52:02In an attempt to stop further dehabilitation a sheltered workshop has been set up in the hospital for a handful of the more motivated patients.
52:11Rehabilitation is most successful when patients can avoid long-term admission to institutions like Ackworth.
52:18Social worker Naushad Soparawala encourages patients to return to their old jobs in the community as soon as possible.
52:27Three years ago Bholenath Jallal suspected he had leprosy from seeing a film about it.
52:33He came to Ackworth to see if there was a cure.
52:36Jallal suspected he had leprosy from seeing a film about it.
52:40He came forward and was told he could be treated at home.
52:43Bholenath was put on multiple drug therapy and is now cured.
52:48His social worker was also concerned about his financial health as he was unemployed at the time of diagnosis.
52:56With her support Bholenath got a substantial bank loan to buy a three-wheeler taxi.
53:07But he is a rare success.
53:10Leprosy is as much a social as it is a medical problem.
53:14Dr. S.S. Pandya.
53:21Well, let's face it.
53:23No amount of drug taking or vaccine giving is going to eradicate an infectious disease like leprosy.
53:32The reason is that we tend to look for medical solutions to what are basically social problems.
53:40And all these chronic diseases, including tuberculosis, leprosy, BD and so on,
53:47they're not really amenable to purely medical attack.
53:52So I don't think multi-drug therapy and the new drugs are going to eradicate leprosy.
53:57But they're certainly going to change what I like to call the face of leprosy.
54:03Because we're certainly going to be seeing more patients in the early stages of the disease.
54:11And hopefully they're not going to get all the nerve damage and the disability and the deformity that was formerly associated with leprosy.
54:20The sort of leprosy that we see will not be as severe as was seen, say, 50 years ago.
54:26If Gopal, Chandran and Rapanan take their drugs and protect themselves against deformity,
54:33they should not meet with a stigma that usually confronts victims.
54:37And if the stigma disappears, the face of leprosy will have truly been changed.
54:43The fear of leprosy was born out of ignorance.
54:46With education, effective control of the disease is now feasible.
54:51Every victim can afford to be as unconcerned as Marie Bransman.
54:57She's always known that with treatment, her disease poses no danger to herself or anyone else.
55:03No, not at all. Even when I had it, it didn't bother me. I just had another thing, you know.
55:09It really didn't bother me.
55:10No, not at all. Even when I had it, it didn't bother me. I just had another thing, you know.
55:15It really didn't bother me.
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