Paula Johnson: His and hers ... healthcare

Translator: Nika Kotnik Reviewer: Klavdija Cernilogar

Some of my most wonderful memories of childhood

Nekaj mojih najlepših spominov iz otroštva

are of spending time with my grandmother, Mamar,

me veže na preživljanje časa z babico, Mamar,

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

v našem domu za štiri družine v Brooklynu, v New Yorku.

Her apartment was an oasis.

Njeno stanovanje je bilo oaza.

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

Tam sem lahko popila skodelico kave,

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

ki je bila v resnici toplo mleko s samo senco kofeina.

She loved life.

Ljubila je življenje.

And although she worked in a factory,

In čeprav je delala v tovarni, je pridno varčevala in potovala v Evropo.

she saved her pennies and she traveled to Europe.

And I remember poring over those pictures with her

In spominjam se, kako sva se zatopili v fotografije

and then dancing with her to her favorite music.

in potem plesali na njeno najljubšo glasbo.

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

In potem, ko sem imela 8 let in ona 60, se je nekaj spremenilo.

something changed.

She no longer worked or traveled.

Ni več delala ali potovala.

She no longer danced.

Ni več plesala. Nisva več pili kave.

There were no more coffee times.

My mother missed work and took her to doctors

Mama je odšla z dela in jo peljala k zdravnikom,

who couldn't make a diagnosis.

ki niso mogli narediti diagnoze.

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

In moj oče, ki je delal ponoči, je bil z njo vsako popoldne,

just to make sure she ate.

da se je prepričal, da je jedla.

Her care became all-consuming for our family.

Celotna družina je skrbela zanjo.

And by the time a diagnosis was made,

In ko so končno postavili diagnozo, je bila globoko v začaranem krogu.

she was in a deep spiral.

Now many of you will recognize her symptoms.

Veliko vas bo prepoznalo njene simptome.

My grandmother had depression.

Moja babica je bila depresivna.

A deep, life-altering depression,

Globoka depresija, ki spremeni življenje, od katere si ni nikoli opomogla.

from which she never recovered.

And back then, so little was known about depression.

Takrat je bilo o depresiji malo znanega.

But even today, 50 years later,

Ampak celo danes, 50 let kasneje, se imamo še vedno veliko za naučiti.

there's still so much more to learn.

Today, we know that women are 70 percent more likely

Danes vemo, da je za ženske 70 odstotkov večja verjetnost,

to experience depression over their lifetimes

da bodo v svojem življenju izkusile depresijo, v primerjavi z moškimi.

compared with men.

And even with this high prevalence,

In celo pri tej razširjenosti

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

je pri ženskah diagnoza napačna v 30 do 50 odstotkih.

Now we know that women are more likely

Sedaj vemo, da bodo ženske večkrat

to experience the symptoms of fatigue, sleep disturbance,

občutile simptome utrujenosti, motenj spanja,

pain and anxiety compared with men.

bolečine in anksioznosti v primerjavi z moškimi.

And these symptoms are often overlooked

Te simptome pogosto spregledamo kot simptome depresije.

as symptoms of depression.

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

Te razlike med spoloma se ne pojavijo samo pri depresiji,

but they occur across so many diseases.

ampak se pojavijo pri mnogih boleznih.

So it's my grandmother's struggles

Napori moje babice so me poslali na to življenjsko poslanstvo.

that have really led me on a lifelong quest.

And today, I lead a center in which the mission

Danes vodim center, katerega misija

is to discover why these sex differences occur

je odkriti, zakaj se pojavljajo te razlike med spoloma,

and to use that knowledge

in uporabiti to znanje za izboljšanje zdravja žensk.

to improve the health of women.

Today, we know that every cell has a sex.

Danes vemo, da ima vsaka celica spol.

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

To je izraz, ki smo ga skovali na Inštitutu Medicine.

And what it means is that men and women are different

Pomeni, da se moški in ženske razlikujemo celo na celičnem in molekularnem nivoju.

down to the cellular and molecular levels.

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

Pomeni, da se razlikujemo v vseh organih. V možganih, srcih, pljučih, sklepih.

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

Now, it was only 20 years ago

Pred 20 leti smo imeli komaj kaj podatkov o zdravju žensk

that we hardly had any data on women's health

beyond our reproductive functions.

razen o našem reproduktivnem delovanju.

But then in 1993,

Leta 1993 pa je bil sprejet NIH Revitalizacijski zakon.

the NIH Revitalization Act was signed into law.

And what this law did was it mandated

In ta zakon je zahteval,

that women and minorities be included in clinical trials

da so ženske in manjšine vključene v klinične študije,

that were funded by the National Institutes of Health.

ki jih financirajo Nacionalni inštituti za zdravje.

And in many ways, the law has worked.

In na veliko načinov je zakon deloval.

Women are now routinely included in clinical studies,

Ženske sedaj rutinsko vključujejo v klinične študije

and we've learned that there are major differences

in naučili smo se, da obstajajo velike razlike

in the ways that women and men

v načinu, kako ženske in moški izkusijo bolezen.

experience disease.

But remarkably,

Ampak neverjetno,

what we have learned about these differences is often overlooked.

kar smo se naučili o teh razlikah, je pogosto spregledano.

So, we have to ask ourselves the question:

Zato se moramo vprašati: zakaj prepustiti zdravje žensk naključju?

Why leave women's health to chance?

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

In naključju ga prepuščamo na dva načina.

The first is that there is so much more to learn

Prvi je, da se moramo še toliko naučiti in da ne vlagamo

and we're not making the investment

in fully understanding the extent of these sex differences.

v popolno razumevanje obsega teh razlik med spoloma.

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

In drugi je, da ne vzamemo tega, kar smo se naučili,

and routinely applying it in clinical care.

da bi rutinsko uporabili v klinični negi.

We are just not doing enough.

Enostavno tega ne počnemo dovolj.

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

Zato bom z vami delila tri primere,

of where sex differences have impacted the health of women,

kjer so razlike med spoloma vplivale na zdravje žensk,

and where we need to do more.

in kjer moramo storiti še več.

Let's start with heart disease.

Začnimo z boleznimi srca.

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

Je ubijalec žensk številka ena v ZDA.

This is the face of heart disease.

To je obraz srčnih bolezni.

Linda is a middle-aged woman,

Linda je ženska srednjih let, ki so ji namestili stent

who had a stent placed in one of the arteries

v eno izmed arterij, ki gredo do srca.

going to her heart.

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

Ker so se ji simptomi ponavljali, je šla nazaj k zdravniku.

Her doctor did the gold standard test:

Ta je naredil zlati standardni test: srčno kateterizacijo.

a cardiac catheterization.

It showed no blockages.

Ni pokazala nobenih blokad. Lindini simptomi so se nadaljevali.

Linda's symptoms continued.

She had to stop working.

Morala je prenehati z delom. In takrat nas je našla.

And that's when she found us.

When Linda came to us, we did another cardiac catheterization

Ko je prišla k nam, smo naredili še eno kateterizacijo

and this time, we found clues.

in tokrat smo našli sledi.

But we needed another test

A potrebovali smo še en test, da bi postavili diagnozo.

to make the diagnosis.

So we did a test called an intracoronary ultrasound,

Zato smo naredili intrakoronarni ultrazvok,

where you use soundwaves to look at the artery

kjer z zvočnimi valovi pogledamo arterijo od znotraj navzven.

from the inside out.

And what we found

Ugotovili smo, da Lindina bolezen ne izgleda kot tipična moška bolezen.

was that Linda's disease didn't look like

the typical male disease.

The typical male disease looks like this.

Tipična moška bolezen izgleda takole.

There's a discrete blockage or stenosis.

Tu je diskretna blokada ali stenoza.

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

Lindina bolezen, kot bolezen mnogih žensk, izgleda takole.

looks like this.

The plaque is laid down more evenly, more diffusely

Plak je položen bolj enakomerno, bolj difuzno

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

preko arterije in ga težje vidimo.

So for Linda, and for so many women,

Zato za Lindo in za mnoge ženske zlati standardni test ni bil zlat.

the gold standard test wasn't gold.

Now, Linda received the right treatment.

Linda je prejela pravo zdravljenje.

She went back to her life and, fortunately, today

Vrnila se je k svojemu življenju in na srečo ji gre dobro.

she is doing well.

But Linda was lucky.

A Linda je imela srečo. Našla je nas, mi smo našli njeno bolezen.

She found us, we found her disease.

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

A za preveč žensk ni tako.

We have the tools.

Imamo orodja. Imamo tehnologijo za postavitev diagnoze.

We have the technology to make the diagnosis.

But it's all too often that these sex diffferences

A vse prevečkrat te razlike med spoloma spregledamo.

are overlooked.

So what about treatment?

Kako je z zdravljenjem?

A landmark study that was published two years ago

Študija, ki je bila objavljena pred dvema letoma,

asked the very important question:

je zastavila pomembno vprašanje:

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

Katera so najbolj učinkovita zdravljenja srčnih bolezni žensk?

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

Avtorji so pogledali članke, napisane v desetih letih,

and hundreds had to be thrown out.

in na stotine so jih morali zavreči.

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

Odkrili so, da izmed tistih, ki so jih morali izključiti,

65 percent were excluded

je bilo 65 odstotkov takih, v katere so bile ženske sicer vključene,

because even though women were included in the studies,

the analysis didn't differentiate between women and men.

vendar pri njih analize niso razlikovale med moškimi in ženskami.

What a lost opportunity.

Kakšna izgubljena priložnost.

The money had been spent

Denar smo zapravili in nismo pogledali, kako je šlo ženskam.

and we didn't learn how women fared.

And these studies could not contribute one iota

In te študije niso prispevale niti malo k zelo, zelo pomembnemu vprašanju,

to the very, very important question,

what are the most effective treatments

katera so najučinkovitejša zdravljenja srčnih bolezni pri ženskah?

for heart disease in women?

I want to introduce you to Hortense, my godmother,

Predstavila vam bom Hortense, mojo botro,

Hung Wei, a relative of a colleague,

Hung Wei, sorodnico sodelavke,

and somebody you may recognize --

in nekoga, ki ga morda prepoznate--

Dana, Christopher Reeve's wife.

Dano, ženo Christopherja Reeva.

All three women have something very important in common.

Vsem trem ženskam je skupno nekaj zelo pomembnega.

All three were diagnosed with lung cancer,

Vsem trem so diagnosticirali rak pljuč,

the number one cancer killer of women

najbolj pogost rak, ki je vzrok smrti žensk v ZDA danes.

in the United States today.

All three were nonsmokers.

Vse tri so bile nekadilke.

Sadly, Dana and Hung Wei died of their disease.

Na žalost sta Dana in Hung Wei umrli zaradi bolezni.

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

Danes vemo, da imajo nekadilke trikrat večjo verjetnost,

to be diagnosed with lung cancer than are men

da jim diagnosticirajo raka pljuč kot nekadilci.

who are nonsmokers.

Now interestingly, when women are diagnosed with lung cancer,

Zanimivo, ko ženskam diagnosticirajo raka pljuč,

their survival tends to be better than that of men.

je njihovo preživetje boljše od moških.

Now, here are some clues.

Tu je nekaj sledi.

Our investigators have found that there are

Naši raziskovalci so odkrili, da so

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

določeni geni v celicah pljučnega tumorja pri moških in ženskah.

And these genes are activated

Te gene aktivira predvsem estrogen.

mainly by estrogen.

And when these genes are over-expressed,

In ko so ti geni preveč izraženi,

it's associated with improved survival

je to povezano z izboljšanim preživetjem samo pri mladih ženskah.

only in young women.

Now this is a very early finding

To je zelo zgodnje odkritje in še ne vemo, ali je pomembno za klinično oskrbo.

and we don't yet know whether it has relevance

to clinical care.

But it's findings like this that may provide hope

Ampak taka odkritja nam dajejo upanje

and may provide an opportunity to save lives

in morda lahko prinesejo priložnost, da rešimo življenja moških in žensk.

of both women and men.

Now, let me share with you an example

Naj z vami delim primer,

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

ko upoštevanje razlik med spoloma, lahko žene znanost naprej.

Several years ago a new lung cancer drug

Pred nekaj leti so ocenjevali novo zdravilo za raka pljuč

was being evaluated,

and when the authors looked at whose tumors shrank,

in ko so avtorji pogledali, čigavi tumorji so se skrčili,

they found that 82 percent were women.

so ugotovili, da je bilo 82 odstotkov žensk.

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

To je vodilo k vprašanju, zakaj.

And what they found

Odkrili so, da so bile genetske mutacije, na katere je ciljalo zdravilo,

was that the genetic mutations that the drug targeted

were far more common in women.

veliko pogostejše pri ženskah.

And what this has led to

In to je vodilo v veliko bolj oseben pristop

is a more personalized approach

to the treatment of lung cancer that also includes sex.

zdravljenja raka, ki vključuje tudi spol.

This is what we can accomplish

To lahko dosežemo, če zdravja žensk ne prepustimo naključju.

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

We know that when you invest in research,

Vemo, da ko investiraš v raziskave, dobiš rezultate.

you get results.

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

Poglejte razvoj umrljivosti zaradi raka dojke.

And now take a look at the death rates

Sedaj pa poglejte umrljivost zaradi pljučnega raka pri ženskah skozi čas.

from lung cancer in women over time.

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

Poglejmo dolarje, vložene v raka na dojki - to so vloženi dolarji na smrt -

these are the dollars invested per death --

and the dollars invested in lung cancer.

in dolarje, vložene v raka na pljučih.

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

Jasno je, da je naše vlaganje v raka dojke prineslo rezultate.

has produced results.

They may not be fast enough,

Morda niso dovolj hitri, ampak rezultati so.

but it has produced results.

We can do the same

Lahko naredimo enako za raka pljuč in vsako bolezen.

for lung cancer and for every other disease.

So let's go back to depression.

Pojdimo nazaj k depresiji.

Depression is the number one cause

Depresija je danes vzrok številka ena na svetu za invalidnost žensk.

of disability in women in the world today.

Our investigators have found

Naši raziskovalci so ugotovili, da obstajajo razlike v možganih

that there are differences in the brains

of women and men

moških in žensk v območjih, ki so povezana z razpoloženjem.

in the areas that are connected with mood.

And when you put men and women

In ko pregledaš moške in ženske s funkcionalno magnetno resonanco -

in a functional MRI scanner --

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

ta pokaže, kako možgani delujejo, ko so aktivirani -

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

jih daš v skener in jih izpostaviš stresu.

You can actually see the difference.

Lahko dejansko vidiš razliko.

And it's findings like this

In za taka odkritja verjamemo, da vsebujejo določene razlage,

that we believe hold some of the clues

for why we see these very significant sex differences

zakaj vidimo vse te razlike med spoloma pri depresiji.

in depression.

But even though we know

Ampak čeprav vemo, da se te razlike pojavljajo,

that these differences occur,

66 percent

je 66 odstotkov raziskav možganov, ki se začnejo na živalih,

of the brain research that begins in animals

is done in either male animals

narejenih na živalih moškega spola ali na živalih nedoločenega spola.

or animals in whom the sex is not identified.

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

Zato se spet vrnimo k vprašanju: Zakaj prepustiti zdravje žensk naključju?

Why leave women's health to chance?

And this is a question that haunts those of us

In to vprašanje preganja tiste med nami v znanosti in medicini,

in science and medicine

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

ki verjamemo, da smo na robu tega, da bomo lahko dramatično izboljšali

the health of women.

zdravje žensk.

We know that every cell has a sex.

Vemo, da ima vsaka celica spol.

We know that these differences are often overlooked.

Vemo, da so te razlike pogosto spregledane.

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

In zatorej vemo, da ženske ne uživajo vseh koristi

of modern science and medicine today.

moderne znanosti in medicine.

We have the tools

Imamo orodja, a manjkata nam skupinska volja in zagon.

but we lack the collective will and momentum.

Women's health is an equal rights issue

Zdravje žensk je problem enakopravnosti, tako pomemben kot enako plačilo.

as important as equal pay.

And it's an issue of the quality

In je problem kakovosti in integritete znanosti in medicine.

and the integrity of science and medicine.

(Applause)

(Aplavz)

So imagine the momentum we could achieve

Predstavljajte si zagon, ki bi ga lahko dosegli v napredku zdravja žensk,

in advancing the health of women

if we considered whether these sex differences were present

če bi upoštevali, ali so te razlike med spoloma prisotne

at the very beginning of designing research.

na začetku načrtovanja raziskave.

Or if we analyzed our data by sex.

Ali če bi analizirali podatke glede na spol.

So, people often ask me:

Ljudje me pogosto vprašajo: "Kaj lahko storim?"

What can I do?

And here's what I suggest:

In to predlagam:

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

Prvič, predlagam vam, da o zdravju žensk premišljujete na isti način,

in the same way

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

kot premišljujete in vam je mar za druge pomembne cilje.

And second, and equally as important,

In drugič, enako pomembno je, da kot ženska vprašate svojega zdravnika

that as a woman,

you have to ask your doctor

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

in zdravnike, ki skrbijo za vaše bližnje:

Is this disease or treatment different in women?

Je ta bolezen ali zdravljenje pri ženskah drugačna?

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

To je pomembno vprašanje, ker je odgovor verjetno da.

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

A vaš zdravnik morda ne ve odgovora, vsaj ne še.

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

Ampak če vprašate, bo verjetno šel poiskat odgovor.

go looking for the answer.

And this is so important,

In to je zelo pomembno, ne samo za nas, ampak za vse, ki jih imamo radi.

not only for ourselves,

but for all of those whom we love.

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

Naj bo to mati, hči, sestra, prijateljica ali babica.

a friend or a grandmother.

It was my grandmother's suffering

Trpljenje moje babice je navdihnilo moje delo na izboljšanju zdravja žensk.

that inspired my work

to improve the health of women.

That's her legacy.

To je njena zapuščina.

Our legacy can be to improve the health of women

Naša zapuščina je lahko izboljšanje zdravja žensk

for this generation

te generacije in naslednjih generacij.

and for generations to come.

Thank you.

Hvala.

(Applause)

(Aplavz)