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THALIDOMIDE IN SPAIN

When the thalidomide scandal erupted in 1961, the drug was soon banned. Yet pregnant womenin Spain continued taking it until the 1980s

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and the authorities refuse to accept responsibility.Caroline Scott reports. Portraits by Oliver Haupt

Jesus

THE SUNDAY TIMES MAGAZII{E. 13

EstherFernandez,49

FranciscoGonzalez,57

THALIDOMIDE IN SPAIN

ffiMarianoGarmendia,37

efore Lierni Iparragirre could seeher newborn third child, MarianoGarmendia, nursing staff whisked himaway. "I couldn't understand why

everyone was crying," she says. "Then theytold me: this baby can't live, he is going toGod. They were praying to God he would die,because life would be so terrible for him."

The staff at the hospital in San Sebastian,northern Spain, wouldn't let Lierni see herbaby that day

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June 14,1977 -butherhusband, Jose, sawhim. Jose gently

explained to Lierni: "We have a boy, but hehas no arms, and a very short leg. People areafraid. IIow can a child with disabilities likethis live any kind of life? Everyone is tellingus to leave him here and forget about him."But when Lierni sawMariano forthe ftrsttime, a kind of maternal fury kicked in. Shesaid: "No. Give him to me. I will flght for himwith everything I have."

In the little Basque village ofLegorreta,Mariano was a freakish sight. Spain was stillmaking the slow transition towardsdemocracy and a free-market economy after36 years of fascist dictatorship under GeneralFranco, who died inl975. Medical care wasbasic, knowledge of Mariano's speciflcdifficulties almost non-existent. It wasn'tuntil Mariano was a young man of 2O, inl997,that his mother flnally heard the wordthalidomide

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the name of a teratogenicdrug developed in postwar Germany to treatmorning sickness in pregnant women, andwidelypromoted throughout the world as a'gentle tonic" for numerous ills.

By then, in Britain and most of thedeveloped world, the devastating side effectsof the drug had been known for more thanthree decades

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thalidomide had becomea byword for scientific negligence andmarketing run amok. The whistle was flrstblown in 1961- 16 years before Mariano wasborn

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when doctors began suspecting thatthe drug was the cause of limb and bowelmalformations in newborn babies. By thetime it was withdrawn from the market byits producers, Chemie Griinenthal, inNovember of that year, it is conservativelyestimated it had killed 1OO,OO0 childrenthrough miscarriage, stillbirth and infanticideand maimed at least 2O,OO0 more. Around3,500 thalidomiders survive worldwide.

lnl973, after a long, landmark SundayTimes campaign against Distillers, the UKdistributor of thalidomide

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during which theeditor, Harry Evans, risked imprisonment bydeffing contempt of court laws

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the Britishvictims flnally began to be compensated.The Thalidomide Trust receives f,8m a yearfrom Diageo, which acquired Distillers, and,since 2010,

10m a year from the government,which it distributes ro the 468 Britishsuryivors, now in their fifties, on a pointssystem according to their impairment.

Yet in Spain, where until2008 thegovernment flatly denied ever importingthalidomide, the scandal is only now fullyunfolding. Spanish babies have continued to

THALIDOMIDE IN SPAIN

General Franco (above) left Spain "like a third-world country" after his death in 1975.'The marketing men could do what they liked," says one of the Spanish victims

be bornwith limb deflciencies and facialpatterning so similar to those of the 1960ssurvivors, it is impossible not to look forconnections. The youngest suspected Spanishvictim I have found was born in 1985.

Now, a trove of official documents,correspondence and doctors' prescriptionsfrom1976 and,L977 have come to light thatreveal that talidomida, under a variety ofbrand names, was in fact widely available inSpain throughout the 1970s and perhaps eveninto the 1980s. Combined with a woeful andultimately lethal lack of proper controls andsafeguarding by the Spanish government,it has resulted in several decades'moresuffering and countless young victims.

Rafael Basterrechea,4g, vice president ofthe Association of Victims of Thalidomide inSpain (Avite), estimates there may be 250 to300 victims alive in Spain today. "When thesemalformations began to appear, no one wroteabout it, no one talked about it," he says. "Youhave to understand, up until the 1970s peoplestill travelled by mule in Spain. The literacyrate was 60% toTOo/o; few even had a radio. To anorthern European pharmaceutical company,Spain was like a third-world country. Themarketing men could do what they liked."

And theydid. Amongthe damningdocuments seen by The Sunday TimesMagazine, a letter from Grtnenthal to its sistercompany in Madrid, dated December 21, 1961,reads: "You write that you will not disclose thereason for the sales ban to the Spanish doctorsand that you will furthermore inform yourexternal stallonly partially, not fully." It pointsout that doctors in Germany, Belgium, theNetherlands, Porlugal, Switzerland andseveral other countries have received letterswarning them of the speciflc problems withthalidomide. "But if you do not consider suchmeasures necessary [in Spain] then we concur."

The letteris one ofhundreds that has lainundisturbed for half a lifetime in the Germanstate archives in Dusseldorf, and discovered bythe UK Thalidomide Trust's National AdvisoryCouncil (NAC). They reveal that, in Spain,Grfinenthal showed a breathtakingly cynicaldisregard for human life on an epic scale.

In October 1962, 11 months afterGriinenthal took thalidomide off the market,Jose Riquelme was born in Murcia with ashon leg, which was later amputated. He flrstread about thalidomide in 1980, in a copy ofInterviu magazine, a winning combinationofsoft porn and investigative iournalism })

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you breathed in. You had the priest,the civil guard, the doctor. They werea team, lined up in authority. Therewasn't such a thing as a medical error"

"The Franco was somethingregime

THE SUNDAY TIMES UAGAZINE . 16

that he found on a rubbish dump nearhis parents' house in the little town ofAlcantarilla. He has that copy, still, with itsblack-and-white pictures taken by Snowdonof the British thalidomider TerryWiles.Wiles, also born in 1962, was one of the mostdisabled thalidomide babies in Brirain.His plight became a cause c6ldbre, butSpanish thalidomiders are only nowbeginning to understand their own history.

"The Franco dictatorship kept us hiddenand democracy has forgotten us," saysRiquelme. "No one, including our presentgovernment, has wanted to see or hear."

Riquelme formed Avite in 2003 tocampaign for recognition and compensationand, since 2008, under mounting pressure,the government has grudgingly recognised23 cases

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those whose mothers kept theirprescriptions. They received a one-offpayment in 2011 of between

30,OOO and100,000, depending on their disability

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about one-tenth ofthe average award for othernational schemes. That scheme is now closed.

Mariano Iparragirre didn't receive anycompensation. His mother, Lierni, doesn'tremember the name of the medicine she tookto stop her morning sickness. The family haschecked with the Basque health authorities,but were told all her medical records weredestroyed in the severe floods that devastatedSan Sebastian in 1983. With no paper trail, it'simpossible to prove that Mariano's disabilitieswere caused by thalidomide. But his mother issure. "Here in Spain, theystopped importingit," she says. "But not selling it."

Withgreat difficulty, when Mariano wasfour, Lierni found a physical therapist whotaught him "how to take a piss, how to shower,how to eat, how to dress". She didn't let himuse his feet, as a lot ofthalidornide children inEngland were taught to do because, who writeswith their feet? Mariano, now a draughtsman,learnt to write using his one flnger, supportinga pen with the stump of his Ieft arm. He had 13operations between the ages ofS and 12 toextend his grossly foreshortened right leg by35cm so he canwalkwithout aprosthetic.

Mariano's wife, also called Lierni, whospeaks a little English, tells Mariano's storywhile her mother-in{aw looks miserablyuncomfortable. She cradles her grandchild,Mariano's sleeping daughter, Mara, a perfectone-year-old with eyelashes so thick and darkthey look as though they have been drawn on.Occasionally, she adds a word or two, but shedoesn't look at me: "My love for him wasspecial," she says. "Tell her I tried to frnd himthe best help I could."

Claus Knapp, one ofthe doctors who liftedthe lid on thalidomide in Germany 54 yearsago, moved to Spain in 1963 and now liveswith his wife in Madrid. "I was told there wereno cases here," he says. "Only now are webeginning to discover it's the worst-affectedcountry in the world." On his kitchen table,Knapp spreads out the original charts he and acolleague, Widukind Lenz, made in Hamburgin 1961. Names, pregnancy dates and the days

they took Contergan, the German brand namefor thalidomide, are meticulously plotted ontracing paper. One pill was enough. If womentook it on day 30-35, their child had no legs;day24-28, the child had reduced arms. Onemother swore she hadn't taken anything. Butshe'd had an appendectomy, so Knapp brokeinto the hospital archives and went throughher records, and there it was: thalidomide.

During the telling of this story he dropsthe teapot het holding and it crashes to thefloor. "We were poor, I had a little car, butLenz only had a bike. I worked every night."They started on November 1, 1961, and byNovember 17 they knew what was causing thedeformities. "Truthfully, theywere the mostintense 17 days of my life."

Knapp knows what it is like to take onGriinenthal: following their discovery, thepharmaceutical giant set private detectives onthem. It threatened legal action, it even triedto discredit the mothers who came forward,but on November27,196l, under pressurefrom the German press and department ofhealth, it capitulated and the drug was takenoffthe German market. Britain and the restof the world quickly followed, but not Spain.

Import documents show that, betweenL96O andt9fl, Griinenthal sent 439.OSlg ofraw product to Spain

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enough for 17.5m25mg pills

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and applied for and was granted

THALIDOMIDE IN SPAIN

licences for 1O different products. Around 4mdoses of Softenon, marketed as a sleeping tonic-

"completely natural and safe" -

were soldall over Spain from 1957 to 1963. Insonid 10,registered in three different strengths onJuly 11, 195q was not withdrawn until July1969. Entero-sediv was oftcially withdrawn inSpain in December 1962

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a full year after ithad been removed from the market in otherparts of the world. But Spain's prescribing andclinical reference directory VademecumIntemacional, continued to carry it right upuntil 1975. Talidomida is no longer listed as aningredient, but since doctors were neverwarned of the dangers, theywould presumablyhave continued to use up their stocks. Avite'sRafael Basterrechea believes the product neverchanged. He shows me the packaging from apacket of Entero-sediv tablets from 1975, whichstill has talidomida marked on the box.

The doctorwho delivered EstherFernandez on Aprll 27, t966

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nearly flveyears after Grtinenthal withdrew thalidomidefrom sale

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told her mother: "You have sevenother children. Let this one go, she will onlycause you pain and trouble." Esther was bornwith short arms and one stump of a leg. Shewears a prosthetic, which means a tiny,distorted foot perches on a shelfwhere herknee should be. She wriggles her toes. She'snot remotely self-conscious. "I cried a lot, )D

Madrid in 1961, adding: "We concur"

AnaliaMuffoz,

"You write that you will not disclosethe reason for the sales ban tothe Spanishwrote to its

doctors," GriinenthaIsister company in

THE SUNDAY TIMES IIAGAZINE . '7

but I've worked hard to understand whoI am," she says. "I'm a very strong, beautifulwoman. I love mel" Can I feel your leg? I ask.It's soft and boneless, like a melon. "Now canI feel yours?" she says, laughing.

The doctor who visited the village weeklygave her mother, pregnant and working in theflelds, something from his bag to combat herexhaustion. No prescription? She throws upher hands. "It's very important you understandhow people in Spain lived," she says. "Wewashed our clothes in the river and slept in thesame house as the mules and pigs. The Francoregime was something you breathed in. youhad the priest, the civil guard, rhe doctor.They were a team, lined up in authority. Therewasn't such a thing as a medical error."

Teresa Nebreda called her second son,born limbless andwithout ears, on May 8,1985, Angel

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"Because he looked like anangel," she says. At his birth, doctors toldher: *This is a thalidomide baby." She says:"I decided at that moment I will not becrushed by this." Her love for Angel is specialand ferocious. "He was the most preciouschild in the world. He had the most kisses, themost love. Angel was funny and clever and somotivated. When we went to the supermarkethe? carry sugar between his shoulder andhis cheek. [Ie was a happy boy and my lifewas built around him, my arms were hisarms." Angel died, aged 8, on June 11, 1993,of pneumonia. "I am Avite Member 15

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inmemoriam," she says. "I want some justicefor the survivors. But Angel was never aburden. It has been much harder to livewith his death than his birth."

In 2013 Avite took civil action againstGriinenthal and won. But in November lastyear, Griinenthal's lawyers succeeded ingetting the iudgment reversed on the groundsthe victims sued too late. Ignacio Martinez,Avite's exhausted lawyer, is preparing to takethe case to Spain's supreme court. "stallingworks well for Gninenthal," he says. "Manyvictims now suffer poor health. In the last fewyears, 17 members of Avite have died."

In Germany, the Conterganstiftung (thepost-trial settlement from Grtinenthal ofDMIOOm for those who took Contergan) ranout years ago. The company was grantedimmunity from criminal prosecution and ithas never paid any more, nor has it acceptedresponsibility. Now the British National

Advisory Council is petitioning the Germanchancellor, Angela Merkel, to meet theincreasing ftnancial needs of victims in Britainand across Europe, manyof whom are sufferingfailing health. The campaigners have secured ameeting with the president of the Europeanparliament, Martin Schulz, this Tuesday.

Wherever the NAC goes in Europe, peoplelisten. They bang on doors and stormmeetings, carrying their briefcases onshortened arms, well aware of the discomfortand furore they are causing. Nick Dobrik,the NAC chair and campaign leader, expectsit will only be a matter of time beforeMerkel capitulates.

"The Spanish story is truly awful anddespicable," he fumes. "The actions ofGriinenthal can't be adequately described bythe word'criminal'. Theywere self-evidentiallyevil. We do not understand how the Germangovernment, who had all this information,failed to share its knowledge with fellowgovernments and the medical community.They must now make a fair contribution tothe health needs and independent livingcosts of thalidomide survivors in Denmark,Finland, Italy, Spain, Sweden and the UK."

aving kept thalidomide hidden for solong, the Spanish government nowfaces the task ofdifferentiatingthalidomide victims from those bom

with congenital limb-reduction defrciencies(around 5O in every 1O0,OOO live births). Lastyear, the World llealth Organisation revisedits report on thalidomide embryopathy,identifying and clariffing classic thalidomidefeatures. And St George's Ilospitai in Tootingis in the process ofdeveloping an algorithmto aid diagnosis, but the Spanish governmenthas consistently refused expert help.

A one-armed Avite member I met, whomay or may not be a thalidomide victim,showed me a letter he d received from thedepartment of health, saying: "Your mothermust have fallen, or maybe she smoked ordrank"

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an unhelpful, unscientific responsethat iust adds to the information vacuum Spainis under increasing pressure to address. Whilepoliticians play for time, families bear rhebrunt of caring and carry the flnancial burden.

Analia Muioz, 31, lives in Granada withher parents, Antonio, 63, a plumber, who hasadapted their home for her, and Ana Maria,

THALIDOMIDE IN SPAIN

6O. When Analia was born in 1983 with shortarms and legs, no ankles or hip joints, no ears,a cleft palate and facial deformities andparalysis, doctors said her mother must havecaught a virus. Ana Maria remembers beinggiven an infection and some pills during avisit to hospital when she was three monthspregnant or less, but the hospital recordshave disappeared.

Analia says she had a bad time at school."I was always hiding my hands so peoplecouldn't see them. No one wanted to workwith me." She loved maths, she says, "butI took so long to get from class to class,I gave up. No one helped me." She's done asecretarial course at home and studied to bea tourist guide. She was once offered a job,but she couldn't do it as she needs someoneto help with personal care

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washing,showering, going to the loo. Mum does it all.So no, she has neverworked. The economiccrisis has hit the family hard. Antonio getsa bit of plumbing work, but Analia's onlyincome is

250 (185) a month disabilitybenefit. "The friends I had have paired olTandgot married," she says. "I'm frightened whenmy parents go I'll be alone."

It's impossible to prove conclusively thatthalidomide caused Analia's iniuries, but noone could say that tlle drug was properlywithdrawn from the Spanish market. Thenames roll down the decades. FranciscoGonzalez, who has short arms, was bom in1952 Jesus Marco, no arms, 1961; Luisa Torrijo,short arms, 1953; Esther, 1966; Jose Plasencia,no arms, 1971; Sofia Garcia, no arms or legs,1974; Mariano, 1976; Analia, 1983; Angel, 1985."These are our people," Claus Knapp saysfirmly, looking at the images. 'And I am the lastperson to testify."

For the first 26 years of Mariano's life, hismum looked after him, then his wife Lierni."One month after I met him ar work, I fell inlove," she says. "When I told my mum, the flrstthing she said was: 'How does he wash anddress and clean his arse? Ifyou have childrenhowwill he take care of them?'I didn't care,I iust wanted to be with him. Mariano rarelyasks for help, but it is reatly hard. He can't holdthe children, he can't bathe them, he can'tdress them. We have no help at home so whenI'm not there, his mum has to be."

Mariano's mum is 76 now and at thehouse every day. "Not fust because she loveshim," says Lierni, "but because she feelsguilty." But what happened to Mariano wasn'ther fault. "Of course, but she feels it. That'swhy it's so important not iust to get a flnancialsettlement, but acknowledgement. Until then,this is her iob. Her lifelong legacy. 'I did this tomy boy, so it's my iob for ever and ever to bethere to help him."'I

"Stalling works well for Griinenthal,"says lgnacio Martinez, the Spanishvictims' exhausted lawyer. "Manynow suffer from poor health. ln thelast few years, 17 of them have died"

THE SUNDAY TIMCS MAGAZINE. 19

AttackingtheDevilWatch an exclusive clip fromAttackingtheDevil, a documentary out in September on theoriginal landmarkSundayTimes campaignon tablet, or at thesundaytlmes.co.uk/thali-domide