Paula Johnson: His and hers ... healthcare

Translator: Helena Bedalli Reviewer: Aida Musai

Some of my most wonderful memories of childhood

Disa nga kujtimet me te bukura te femijerise

are of spending time with my grandmother, Mamar,

jane kohet qe kalova me gjyshen time, Mamar,

in our four-family home in Brooklyn, New York.

ne shtepine 4-familjare ne Brooklyn, New York.

Her apartment was an oasis.

Apartamenti i saj ishte nje oaz.

It was a place where I could sneak a cup of coffee,

Ishte vendi ku mund te pija shehurazi nje filxhan kafe,

which was really warm milk with just a touch of caffeine.

qe ishte ne fakt qumesht i ngrohte me nje pike kafe.

She loved life.

Ajo e dashuronte jeten.

And although she worked in a factory,

Edhe pse punonte ne fabrike,

she saved her pennies and she traveled to Europe.

kishte kursyer qindarkat dhe udhetonte ne Europe.

And I remember poring over those pictures with her

Mbaj mend si i studionim fotograite e saj

and then dancing with her to her favorite music.

dhe pastaj kercenim te dyja me muziken e zgjedhur.

And then, when I was eight and she was 60,

Kur une isha 8 dhe ajo 60,

something changed.

dicka ndryshoi.

She no longer worked or traveled.

Ajo ndaloi se punuari dhe udhetuari.

She no longer danced.

Nuk kercente me.

There were no more coffee times.

Nuk pinim me kafe.

My mother missed work and took her to doctors

Nena ime linte punen qe ta conte ate neper doktore

who couldn't make a diagnosis.

te cilet nuk jepnin dot nje diagnoze.

And my father, who worked at night, would spend every afternoon with her,

Babai im, qe punonte naten, rrinte me te dites,

just to make sure she ate.

qe te sigurohej qe ajo hante.

Her care became all-consuming for our family.

Kujdesi per te u be i veshtire per familjen tone.

And by the time a diagnosis was made,

Kur arriten te japin diagnoze,

she was in a deep spiral.

ajo ishte ne gjendje te rende.

Now many of you will recognize her symptoms.

Shume prej jush mund te njohin simptomat e saj.

My grandmother had depression.

Gjyshja ime kishte depresion.

A deep, life-altering depression,

Nje depresion te thelle, qe te ndryshon jeten,

from which she never recovered.

nga i cili nuk u permiresua kurre.

And back then, so little was known about depression.

Ne ate kohe, shume pak njihej per depresionin.

But even today, 50 years later,

Por, edhe sot, pas 50 vjeteve,

there's still so much more to learn.

ka aq shume per te mesuar.

Today, we know that women are 70 percent more likely

Sot, dime qe grate jane 70 perqind me te prirura

to experience depression over their lifetimes

te perjetojne depresionin gjate jetes

compared with men.

krahasuar me burrat.

And even with this high prevalence,

Edhe me kete prirje te larte,

women are misdiagnosed between 30 and 50 percent of the time.

ne 30-50 perqind te rasteve, grate nuk diagnostikohen sakte

Now we know that women are more likely

E dime qe grate jane me te prirura

to experience the symptoms of fatigue, sleep disturbance,

te kene simptomat e lodhjes, shqetesime te gjumit,

pain and anxiety compared with men.

dhimbje dhe ankth, krahasuar me burrat.

And these symptoms are often overlooked

Keto simptoma shpesh neglizhohen

as symptoms of depression.

si simptoma te depresionit.

And it isn't only depression in which these sex differences occur,

Nuk eshte vetem depresioni qe ndodh ku shfaqet dallimi gjinor,

but they occur across so many diseases.

kjo ndodh ne shume semundje.

So it's my grandmother's struggles

E pra, perpjekjet e gjyshes time

that have really led me on a lifelong quest.

bene qe ti hyj ketij kerkimi te vazhdueshem.

And today, I lead a center in which the mission

Sot, une drejtoj nje qender, misioni i te ciles eshte

is to discover why these sex differences occur

te zbuloje pse ndodhin keto dallime gjinore

and to use that knowledge

dhe ta perdore ate njohuri

to improve the health of women.

per te permiresuar shendetin e grave.

Today, we know that every cell has a sex.

sot, dime qe cdo qelize ka gjini.

Now, that's a term coined by the Institute of Medicine.

Ky eshte term i vene nga Instituti i Mjekesise.

And what it means is that men and women are different

Nenkupton qe burrat dhe grate jane te ndryshem

down to the cellular and molecular levels.

deri ne nivele qelizore dhe molekulare.

It means that we're different across all of our organs.

nenkupton qe ne jemi te ndryshem persa i perket organeve.

From our brains to our hearts, our lungs, our joints.

Nga truri te zemra, mushkerite, nyjet.

Now, it was only 20 years ago

Vetem 20 vjet me pare

that we hardly had any data on women's health

nuk kishim ndonje te dhene ne shendetin e gruas

beyond our reproductive functions.

pervec funksioneve riprodhuese.

But then in 1993,

Por ne 1993,

the NIH Revitalization Act was signed into law.

NIH Revitalization Act u miratua si ligj.

And what this law did was it mandated

Ky ligj mandaton

that women and minorities be included in clinical trials

qe grate dhe minoritetet te pershihen ne provat klinike

that were funded by the National Institutes of Health.

qe ishin financuar nga Instituti Nacional i Shendetit.

And in many ways, the law has worked.

Nga shume ane, ligji ka punuar.

Women are now routinely included in clinical studies,

Grate jane pershire ne provat klinike,

and we've learned that there are major differences

dhe ne kemi mesuar se ka dallime te rendesishme

in the ways that women and men

ne menyrat qe burrat dhe grate

experience disease.

i perjetojne semundjet.

But remarkably,

Por, shume here, e neglizhojme

what we have learned about these differences is often overlooked.

ate qe kemi mesuar rreth ketyre diferencave.

So, we have to ask ourselves the question:

Duhet ti bejme pyetjen vetes:

Why leave women's health to chance?

Pse t'ia lesh shansit shendetin e gruas?

And we're leaving it to chance in two ways.

Po ia leme shansit ne dy menyra.

The first is that there is so much more to learn

E para eshte se ka kaq shume per te mesuar

and we're not making the investment

dhe nuk po bejme investimin

in fully understanding the extent of these sex differences.

per te kuptuar plotesisht shtrirjen e dallimeve gjinore.

And the second is that we aren't taking what we have learned,

E dyta eshte qe nuk po marrim ate kemi mesuar,

and routinely applying it in clinical care.

e ta aplikojme ne rutinen e kujdesit klinik.

We are just not doing enough.

Nuk po bejme aq sa duhet.

So, I'm going to share with you three examples

Do ndaj me ju tre shembuj

of where sex differences have impacted the health of women,

sesi diferencat gjinore kane ndikuar shendetin e grave,

and where we need to do more.

dhe ku duhet te bejme me shume.

Let's start with heart disease.

Le te fillojme me semundjen e zemres.

It's the number one killer of women in the United States today.

Eshte vrasesi numer nje i grave ne SHBA sot.

This is the face of heart disease.

Kjo eshte fytyra e semundjes se zemres.

Linda is a middle-aged woman,

Linda eshte nje grua ne moshe te mesme,

who had a stent placed in one of the arteries

qe ka nje stent(tub) ne nje nga arteret

going to her heart.

qe shkojne te zemra e saj.

When she had recurring symptoms she went back to her doctor.

Kur simptomat iu kthyen, ajo shkoi prape te doktori.

Her doctor did the gold standard test:

Ai beri testin e standartit te arte:

a cardiac catheterization.

kateterizimin kardiak.

It showed no blockages.

Nuk tregoi bllokim.

Linda's symptoms continued.

Simptomat e Lindes vazhduan.

She had to stop working.

Ajo u detyrua te linte punen.

And that's when she found us.

Atehere ajo na gjeti ne.

When Linda came to us, we did another cardiac catheterization

Kur erdhi te ne, beme nje kateterizim kardiak tjeter

and this time, we found clues.

dhe kesaj radhe gjetem shenja.

But we needed another test

Por na duhej nje test tjeter

to make the diagnosis.

te benim diagnozen.

So we did a test called an intracoronary ultrasound,

Beme nje test qe quhet ultrasaund intrakoronar

where you use soundwaves to look at the artery

qe perdor valet e zerit per te pare ne arteret

from the inside out.

nga brenda jashte.

And what we found

Ne gjetem qe

was that Linda's disease didn't look like

semundja e Lindes nuk dukej si

the typical male disease.

semundja tipike e meshkujve.

The typical male disease looks like this.

Semundja tipike e meshkujve duket keshtu.

There's a discrete blockage or stenosis.

Eshte nje bllokim i dallueshem ose stenoze.

Linda's disease, like the disease of so many women,

Semundja e Lindes, ashtu si ne shume gra,

looks like this.

duket keshtu.

The plaque is laid down more evenly, more diffusely

Pllaka eshte e shtrire me uniformisht

along the artery, and it's harder to see.

gjate arteries dhe eshte me e veshtire per tu pare.

So for Linda, and for so many women,

Per Linden dhe shume gra te tjera,

the gold standard test wasn't gold.

testi i standarti te arte nuk ishte vertet i arte.

Now, Linda received the right treatment.

Tani, Linda mori mjekimin e duhur.

She went back to her life and, fortunately, today

Ajo vazhdoi jeten e saj dhe fatmiresisht sot

she is doing well.

ajo po shkon mire.

But Linda was lucky.

Por Linda ishte me fat.

She found us, we found her disease.

Ajo na gjeti ne dhe ne gjetem semundjen e saj.

But for too many women, that's not the case.

Per shume gra, nuk ndodh.

We have the tools.

Ne kemi mjetet.

We have the technology to make the diagnosis.

Kemi teknologjine te bejme diagnozen.

But it's all too often that these sex diffferences

Por eshte shume e shpeshte qe diferencat gjinore

are overlooked.

te neglizhohen.

So what about treatment?

Po rreth trajtimit?

A landmark study that was published two years ago

Nje studim referues qe u publikua dy vjet me pare

asked the very important question:

bente nje pyetje shume te rendesishme:

What are the most effective treatments for heart disease in women?

Cilat jane trajtimet me efektive per semundjen e zemres tek grate?

The authors looked at papers written over a 10-year period,

Autoret kerkuan ne shkrimet gjate 10 vjeteve,

and hundreds had to be thrown out.

dhe qindra nga to ishin pa vlere.

And what they found out was that of those that were tossed out,

Ata kuptuan se ne ato qe ishin pa vlere,

65 percent were excluded

65 perqind e tyre

because even though women were included in the studies,

edhe pse perfshinin gra ne studim,

the analysis didn't differentiate between women and men.

analizat nuk diferenconin grate dhe burrat.

What a lost opportunity.

Nje mundesi e shkuar kot.

The money had been spent

Shpenzimi ishte bere

and we didn't learn how women fared.

dhe nuk arritem te mesonim sesi vajti per grate.

And these studies could not contribute one iota

Keto studime nuk kontribuonin aspak

to the very, very important question,

te kjo pyetje shume shume e rendesishme,

what are the most effective treatments

se cilat jane trajtimet me efektive

for heart disease in women?

per semundjen e zemres te grate?

I want to introduce you to Hortense, my godmother,

Dua tju prezantoj me Hortense, kumbares sime,

Hung Wei, a relative of a colleague,

Hung Wei, kusherira e koleges,

and somebody you may recognize --

dhe dikush qe mund ta njihni --

Dana, Christopher Reeve's wife.

Dana, gruaja e Christopher Reeve.

All three women have something very important in common.

Keto tre gra kane dicka shume te rendesishme te perbashket.

All three were diagnosed with lung cancer,

Te treja ishin diagnostikuar me kancer ne mushkeri,

the number one cancer killer of women

kanceri vrases numri nje te grate

in the United States today.

ne SHBA sot.

All three were nonsmokers.

Asnjera nuk pinte duhan.

Sadly, Dana and Hung Wei died of their disease.

Fatkeqsisht, Dana dhe Hung Wei vdiqen nga semundja.

Today, what we know is that women who are nonsmokers are three times more likely

Sot dime qe grate qe s'pine duhan jane tre here me shume te prirura

to be diagnosed with lung cancer than are men

te diagnostikohen me kancer te mushkerise sesa burrat

who are nonsmokers.

qe s'pine duhan.

Now interestingly, when women are diagnosed with lung cancer,

Interesante eshte qe, kur grate diagnostikohen me kancer mushkerie,

their survival tends to be better than that of men.

tendenca per te mbijetuar eshte me e larte se te burrat.

Now, here are some clues.

Ja disa ye dhena.

Our investigators have found that there are

Investigatoret tane gjeten se jane

certain genes in the lung tumor cells of both women and men.

disa gene ne qelizat e tumorit te mushkerise ne te dy, burrat dhe grate.

And these genes are activated

Keto gene aktivizohen

mainly by estrogen.

kryesisht nga estrogjeni.

And when these genes are over-expressed,

Kur keto gene jane te mbi-shprehur,

it's associated with improved survival

kjo shoqerohet me tendence per mbijetese

only in young women.

vetem ne grate e reja.

Now this is a very early finding

Kjo eshte gjetje fillestare

and we don't yet know whether it has relevance

dhe nuk e dime akoma se sa lidhet

to clinical care.

me kujdesin klinik.

But it's findings like this that may provide hope

Por jane gjetje si keto qe sjellin shprese

and may provide an opportunity to save lives

dhe mundesi per te shpetuar jete

of both women and men.

ne te dy, gra dhe burra.

Now, let me share with you an example

Tju tregoj nje shembull

of when we do consider sex differences, it can drive the science.

se kur konsiderojme qe dallimet gjinore e shtyjne shkencen.

Several years ago a new lung cancer drug

Disa vjet me pare po testohej

was being evaluated,

nje ilac i ri per kancerin ne mushkeri,

and when the authors looked at whose tumors shrank,

dhe kur autoret pane te tumoret e zvogeluar,

they found that 82 percent were women.

mesuan qe 82 perqind ishin gra.

This led them to ask the question: Well, why?

Kjo i drejtoi te pyetja: Pse?

And what they found

Ata gjeten se

was that the genetic mutations that the drug targeted

mutacionet gjenetike qe shenjonte ilaci

were far more common in women.

ishin shume me te zakonshme te grate.

And what this has led to

Kjo i ka drejtuar te

is a more personalized approach

nje perpjekje me e personalizuar

to the treatment of lung cancer that also includes sex.

e trajtimit te kancerit te mushkerise qe pershin gjinine.

This is what we can accomplish

Kete mund ta arrijme

when we don't leave women's health to chance.

kur nuk ia leme shansit shendetin e gruas.

We know that when you invest in research,

Dime qe kur investojme ne kerkim

you get results.

marrim rezultate.

Take a look at the death rate from breast cancer over time.

Hidhni nje veshtrim ne perqindjet e vdekjeve nga kanceri i gjirit gjate kohes.

And now take a look at the death rates

Tani shihni perqindjet e vdekjeve

from lung cancer in women over time.

nga kanceri i mushkerise ne gra gjate kohes.

Now let's look at the dollars invested in breast cancer --

Le te shohim dollaret e investuar ne kancerin e gjirit--

these are the dollars invested per death --

keta jane dollare te investuar per vdekje --

and the dollars invested in lung cancer.

dhe dollaret e investuar ne kancerin e mushkerise.

Now, it's clear that our investment in breast cancer

Eshte e qarte qe investimi ne kancerin e gjirit

has produced results.

ka dhene rezultat.

They may not be fast enough,

Mund te mos jete shume i shpejte,

but it has produced results.

por ka dhene rezultat.

We can do the same

Mund te bejme te njejten

for lung cancer and for every other disease.

per kancerin e mushkerise dhe cdo semundje tjeter.

So let's go back to depression.

Le te kthehemi te depresioni.

Depression is the number one cause

Depresioni eshte shkaku numer nje

of disability in women in the world today.

i paaftesise te grate ne bote sot.

Our investigators have found

Investigatoret tane kane gjetur

that there are differences in the brains

qe ka dallime ne trurin

of women and men

e grave dhe burrave

in the areas that are connected with mood.

ne zonat qe jane te lidhura me gjendjen shpirterore.

And when you put men and women

Kur ve grate dhe burrat

in a functional MRI scanner --

ne nje skaner MRI funksional --

that's the kind of scanner that shows how the brain is functioning when it's activated --

ky eshte lloji i skanerit qe tregon si funksionon truri kur eshte i aktivizuar --

so you put them in the scanner and you expose them to stress.

pra i ve ne skaner dhe i ekspozon ndaj stresit.

You can actually see the difference.

Mund te shohesh qarte dallimin.

And it's findings like this

Jane gjetje si keto

that we believe hold some of the clues

qe ne besojme se mbajne te dhena

for why we see these very significant sex differences

se pse shohim kete dallim gjinor kaq te theksuar

in depression.

tek depresioni.

But even though we know

Por edhe pse dime

that these differences occur,

qe keto dallime ekzistojne,

66 percent

66 perqind

of the brain research that begins in animals

e kerkimit ne tru qe fillon tek kafshet

is done in either male animals

behet ose ne kafshe meshkuj

or animals in whom the sex is not identified.

ose ne kafshe me gjini te paidentifikuar.

So, I think we have to ask again the question:

Mendoj qe duhet te bejme pyetjen prape:

Why leave women's health to chance?

Pse tja lesh shansit shendetin e gruas?

And this is a question that haunts those of us

Kjo eshte pyetje qe na shpon ne

in science and medicine

te shkences dhe mjekesise

who believe that we are on the verge of being able to dramatically improve

qe besojme se jemi rrugen e permiresimit

the health of women.

dramatik te shendetit te grave.

We know that every cell has a sex.

Ne dime qe cdo qelize ka gjini.

We know that these differences are often overlooked.

E dime qe keto dallime neglizhohen.

And therefore we know that women are not getting the full benefit

Si rrjedhim e dime qe grate nuk po marrin perfitimin e plote

of modern science and medicine today.

te shkences dhe mjekesise moderne sot.

We have the tools

Ne kemi mjetet

but we lack the collective will and momentum.

por nuk kemi deshiren dhe vrullin kolektiv.

Women's health is an equal rights issue

Shendeti i gruas eshte nje ceshtje te drejtash te barabarta

as important as equal pay.

po aq i rendesishem sa pagesa e barabarte.

And it's an issue of the quality

Eshte problem i cilesise

and the integrity of science and medicine.

dhe integritetit te shkences dhe mjekesise.

(Applause)

(Duartrokitje)

So imagine the momentum we could achieve

Imagjinoni vrullin qe mund te marrim

in advancing the health of women

ne avancimin e shendetit te gruas

if we considered whether these sex differences were present

nese konsiderojme se dallimet gjinore jane aty

at the very beginning of designing research.

ne fillimet e hershme te dizajnimit te kerkimit.

Or if we analyzed our data by sex.

Ose nese analizojme te dhenat tona nga gjinia.

So, people often ask me:

Njerezit me pyesin shpesh:

What can I do?

Cfare mund te bej une?

And here's what I suggest:

Ketu une sugjeroj:

First, I suggest that you think about women's health

E para, qe ju te mendoni per shendetin e gruas

in the same way

ne te njejten menyre

that you think and care about other causes that are important to you.

qe mendoni dhe kujdeseni per ceshtjet e tjera qe jane te rendesishme per ju.

And second, and equally as important,

E dyta dhe po aq e rendesishme,

that as a woman,

qe si grua,

you have to ask your doctor

ti duhet t'i kerkosh doktorit tend

and the doctors who are caring for those who you love:

dhe doktoreve te te afermeve te tu:

Is this disease or treatment different in women?

A eshte kjo semundje apo trajtim i ndryshem te grate?

Now, this is a profound question because the answer is likely yes,

Kjo eshte nje pyetje e thelle sepse pergjigjia mund te jete po,

but your doctor may not know the answer, at least not yet.

por doktori juaj mund te mos e dije pergjigjen, akoma.

But if you ask the question, your doctor will very likely

Por nese ti ben pyetjen,

go looking for the answer.

doktori do kerkoje per pergjigjen.

And this is so important,

Dhe kjo eshte kaq e rendesishme,

not only for ourselves,

jo vetem per ne,

but for all of those whom we love.

por per te gjithe ata qe duam.

Whether it be a mother, a daughter, a sister,

Qofte nene, vajze, moter,

a friend or a grandmother.

shoqe apo gjyshe.

It was my grandmother's suffering

Ishte vuajtja e gjyshes time

that inspired my work

qe me frymezoi

to improve the health of women.

per te permiresuar shendetin e gruas.

That's her legacy.

Kjo eshte legacia e saj.

Our legacy can be to improve the health of women

Legacia jone eshte permiresimi i shendetit te grave

for this generation

per kete gjenerate

and for generations to come.

dhe gjeneratat e ardhshme.

Thank you.

Falemnderit.

(Applause)

(Duartrokitje)