Paula Johnson: His and hers ... healthcare

Translator: Pei Fang Ng Reviewer: Sam HK

Some of my most wonderful memories of childhood

Semasa kecil, saya selalu menghabiskan masa yang indah

are of spending time with my grandmother, Mamar,

bersama nenek saya, Mamar,

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

di rumah yang didiami 4 keluarga di Brooklyn, New York.

Her apartment was an oasis.

Saya suka berada di situ.

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

Saya akan minum kopi secara diam-diam.

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

Kopi itu campuran susu panas dan kafeina.

She loved life.

Nenek saya menikmati kehidupannya.

And although she worked in a factory,

Walaupun dia bekerja di kilang,

she saved her pennies and she traveled to Europe.

dia berjimat dan menggembara ke Eropah.

And I remember poring over those pictures with her

Saya pernah melihat gambar-gambarnya bersama dia

and then dancing with her to her favorite music.

dan menari dengan dia mengikut musik kegemarannya.

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

Semasa saya berusia 8 tahun, dan dia 60,

something changed.

sesuatu berlaku.

She no longer worked or traveled.

Dia tidak lagi bekerja atau menggembara.

She no longer danced.

Dia tidak lagi menari.

There were no more coffee times.

Tiada lagi masa untuk minum kopi.

My mother missed work and took her to doctors

Mak saya ambil cuti dan bawa dia jumpa doktor,

who couldn't make a diagnosis.

tapi penyakitnya tidak diketahui.

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

Setiap petang, ayah saya yang bekerja malam menemaninya

just to make sure she ate.

untuk memastikan dia memakan sesuatu.

Her care became all-consuming for our family.

Masalah kesihatannya menjadi tumpuan kami.

And by the time a diagnosis was made,

Ketika jenis penyakitnya diketahui,

she was in a deep spiral.

dia telah berada dalam keadaan yang serius.

Now many of you will recognize her symptoms.

Kebanyakan antara anda tahu tentang simptonnya.

My grandmother had depression.

Nenek saya menderitai kemurungan.

A deep, life-altering depression,

Penyakit ini mengubah kehidupannya

from which she never recovered.

dan dia tidak pernah pulih daripadanya.

And back then, so little was known about depression.

Pada masa itu, cuma terdapat sedikit maklumat tentang kemurungan.

But even today, 50 years later,

Kini, selepas 50 tahun,

there's still so much more to learn.

masih terdapat banyak hal yang perlu dikaji tentangnya.

Today, we know that women are 70 percent more likely

Kini, kita tahu bahawa risiko wanita menderitai kemurungan

to experience depression over their lifetimes

Kini, kita tahu bahawa risiko wanita menderitai kemurungan

compared with men.

adalah 70% lebih tinggi daripada lelaki.

And even with this high prevalence,

Walaupun risikonya amat tinggi,

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

kadar kesilapan diagnosis terhadap wanita adalah antara 30% - 50%.

Now we know that women are more likely

Kita juga tahu bahawa wanita lebih mudah

to experience the symptoms of fatigue, sleep disturbance,

menderitai kepenatan, kecelaruan tidur,

pain and anxiety compared with men.

kesakitan dan kerisauan berbanding dengan lelaki.

And these symptoms are often overlooked

Selalunya, semua simpton ini tidak dikaitkan

as symptoms of depression.

dengan simpton kemurungan.

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

Faktor perbezaan jantina bukan saja wujud dalam penyakit kemurungan,

but they occur across so many diseases.

ia juga wujud dalam penyakit lain.

So it's my grandmother's struggles

Penyakit nenek saya inilah

that have really led me on a lifelong quest.

yang mendorong saya mencari jawapannya.

And today, I lead a center in which the mission

Kini, saya memimpin sebuah pusat yang bertujuan

is to discover why these sex differences occur

mengkaji mengapa terdapatnya faktor perbezaan jantina

and to use that knowledge

dan menggunakan pengetahuan ini

to improve the health of women.

untuk memperbaik kesihatan wanita.

Today, we know that every cell has a sex.

Kini, kita tahu bahawa sel badan mempunyai jantina.

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

Pernyataan ini diberikan oleh Institut Perubatan, Amerika.

And what it means is that men and women are different

Maksudnya, sel dan molekul bagi lelaki dan wanita adalah berbeza.

down to the cellular and molecular levels.

Maksudnya, sel dan molekul bagi lelaki dan wanita adalah berbeza.

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

Jadi, organ lelaki dan wanita adalah berbeza,

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

sama ada otak, jantung, peparu, atau sendi kita.

Now, it was only 20 years ago

Pada 20 tahun yang lalu,

that we hardly had any data on women's health

selain fungsi reproduktif,

beyond our reproductive functions.

kita kekurangan data tentang kesihatan wanita.

But then in 1993,

Tapi pada tahun 1993,

the NIH Revitalization Act was signed into law.

Akta Pengukuhan Semula NIH diluluskan.

And what this law did was it mandated

Undang-undang ini mewajibkan

that women and minorities be included in clinical trials

penglibatan wanita dan golongan minoriti dalam ujian klinikal

that were funded by the National Institutes of Health.

yang ditaja oleh Institut Kesihatan Kebangsaan, Amerika.

And in many ways, the law has worked.

Undang-undang ini amat berkesan.

Women are now routinely included in clinical studies,

Kini, wanita terlibat dalam kajian klinikal

and we've learned that there are major differences

dan kita tahu bahawa terdapat perbezaan utama

in the ways that women and men

dari segi bagaimana wanita dan lelaki menderitai penyakit.

experience disease.

dari segi bagaimana wanita dan lelaki menderitai penyakit.

But remarkably,

Tapi, faktor perbezaan yang telah diketahui ini tidak diberikan perhatian.

what we have learned about these differences is often overlooked.

Tapi, faktor perbezaan yang telah diketahui ini tidak diberikan perhatian.

So, we have to ask ourselves the question:

Jadi, soalannya ialah:

Why leave women's health to chance?

Mengapa kita merisikokan kesihatan wanita?

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

Terdapat 2 masalah.

The first is that there is so much more to learn

Pertama, terdapat banyak lagi yang perlu dikaji,

and we're not making the investment

tapi kita tidak berusaha memahami

in fully understanding the extent of these sex differences.

setakat mana perbezaan lelaki dan wanita ini.

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

Kedua, kita tidak menggunakan pengetahuan sedia ada

and routinely applying it in clinical care.

dan mengamalkannya dalam rawatan kesihatan.

We are just not doing enough.

Usaha kita tidak memadai.

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

Jadi, saya akan berkongsi 3 contoh

of where sex differences have impacted the health of women,

bagaimana faktor perbezaan jantina telah mempengaruhi kesihatan wanita,

and where we need to do more.

dan perkara yang perlu dilakukan.

Let's start with heart disease.

Kita mulakan dengan penyakit jantung.

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

Kini, ia pembunuh utama wanita di Amerika.

This is the face of heart disease.

Dia pesakit jantung.

Linda is a middle-aged woman,

Linda wanita pertengahan umur.

who had a stent placed in one of the arteries

Sebuah alat sokongan ditempatkan pada salah satu arteri

going to her heart.

yang menuju ke jantungnya.

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

Dia menemui doktornya setelah dia mengalami simpton yang berulang.

Her doctor did the gold standard test:

Doktornya menjalankan ujian standard:

a cardiac catheterization.

pengkateteran jantung.

It showed no blockages.

Arterinya tidak tersumbat.

Linda's symptoms continued.

Simpton Linda berterusan.

She had to stop working.

Dia terpaksa berhenti bekerja.

And that's when she found us.

Pada masa itulah dia menemui kami.

When Linda came to us, we did another cardiac catheterization

Kami menjalankan ujian pengkateteran jantung

and this time, we found clues.

dan kali ini, kami menemui sesuatu.

But we needed another test

Tapi, kami perlu menjalankan ujian lain

to make the diagnosis.

untuk membuat diagnosis itu.

So we did a test called an intracoronary ultrasound,

Jadi, kami menjalankan ujian ultrabunyi intrakoronari,

where you use soundwaves to look at the artery

iaitu menggunakan gelombang bunyi untuk mencari

from the inside out.

arteri yang bermasalah.

And what we found

Kami mendapati

was that Linda's disease didn't look like

bahawa penyakit Linda

the typical male disease.

berbeza daripada penyakit yang dialami lelaki.

The typical male disease looks like this.

Bagi lelaki, ia kelihatan begini.

There's a discrete blockage or stenosis.

Terdapat penyempitan yang berasingan.

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

Seperti kebanyakan wanita, penyakit Linda

looks like this.

kelihatan begini.

The plaque is laid down more evenly, more diffusely

Plak di situ lebih seimbang dan wujud

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

di sepanjang arterinya, dan ia lebih sukar ditemui.

So for Linda, and for so many women,

Jadi, untuk Linda dan kebanyakan wanita,

the gold standard test wasn't gold.

ujian standard tidak sesuai bagi mereka.

Now, Linda received the right treatment.

Linda telah menerima rawatan yang betul

She went back to her life and, fortunately, today

dan menjalani kehidupan yang normal semula.

she is doing well.

Kini, dia baik saja.

But Linda was lucky.

Tapi, Linda bernasib baik.

She found us, we found her disease.

Dia menemui kami, dan kami menemui penyakitnya.

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

Tapi bagi kebanyakan wanita, ia bukannya begitu.

We have the tools.

Kami mempunyai peralatannya

We have the technology to make the diagnosis.

dan teknologi untuk mendiagnosis.

But it's all too often that these sex diffferences

Tapi, selalunya faktor perbezaan jantina

are overlooked.

tidak diberikan perhatian.

So what about treatment?

Bagaimana pula dengan rawatan?

A landmark study that was published two years ago

Sebuah kajian yang penting diterbitkan 2 tahun yang lalu.

asked the very important question:

Soalan kajian itu ialah:

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

Apakah rawatan penyakit jantung yang paling berkesan bagi wanita?

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

Para pengkaji membaca artikel yang telah diterbitkan dalam masa 10 tahun

and hundreds had to be thrown out.

dan beratus-ratus artikel didapati tidak membantu.

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

Antara artikel yang tidak membantu itu,

65 percent were excluded

65% daripadanya tidak membantu

because even though women were included in the studies,

kerana walaupun wanita terlibat dalam kajian-kajian itu,

the analysis didn't differentiate between women and men.

analisis yang dijalankan tidak membezakan wanita dan lelaki.

What a lost opportunity.

Sayang sekali.

The money had been spent

Wang telah dibelanjakan,

and we didn't learn how women fared.

tapi wanita tidak menerima manfaatnya.

And these studies could not contribute one iota

Kajian-kajian itu tidak dapat menjawab

to the very, very important question,

soalan yang amat penting:

what are the most effective treatments

Apakah rawatan penyakit jantung yang paling berkesan bagi wanita?

for heart disease in women?

Apakah rawatan penyakit jantung yang paling berkesan bagi wanita?

I want to introduce you to Hortense, my godmother,

Saya perkenalkan Hortense, ibu pembaptisan saya;

Hung Wei, a relative of a colleague,

Hung Wei, saudara kepada rakan sekerja saya,

and somebody you may recognize --

dan mungkin anda kenal dia:

Dana, Christopher Reeve's wife.

Dana, isteri Christopher Reeve.

All three women have something very important in common.

Mereka mempunyai satu persamaan yang amat penting.

All three were diagnosed with lung cancer,

Mereka didiagnosis dengan kanser peparu.

the number one cancer killer of women

Di Amerika, ia kanser yang meragut paling banyak nyawa wanita.

in the United States today.

Di Amerika, ia kanser yang meragut paling banyak nyawa wanita.

All three were nonsmokers.

Mereka bukan perokok.

Sadly, Dana and Hung Wei died of their disease.

Malangnya, Dana dan Hung Wei telah meninggal dunia.

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

Risiko wanita yang bukan perokok mendapat kanser peparu

to be diagnosed with lung cancer than are men

adalah 3 kali lebih tinggi berbanding dengan lelaki yang bukan perokok.

who are nonsmokers.

adalah 3 kali lebih tinggi berbanding dengan lelaki yang bukan perokok.

Now interestingly, when women are diagnosed with lung cancer,

Tapi, bagi wanita yang didiagnosis dengan kanser peparu,

their survival tends to be better than that of men.

jangka bertahan hidup mereka adalah lebih tinggi daripada lelaki.

Now, here are some clues.

Berikut merupakan sebab-sebabnya.

Our investigators have found that there are

Pengkaji kami telah mendapati bahawa terdapat

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

gen-gen tertentu dalam sel-sel tumor peparu wanita dan lelaki.

And these genes are activated

Gen-gen ini diaktifkan oleh estrogen.

mainly by estrogen.

Gen-gen ini diaktifkan oleh estrogen.

And when these genes are over-expressed,

Apabila gen-gen ini terlampau banyak,

it's associated with improved survival

ia cuma meningkatkan jangka bertahan hidup wanita.

only in young women.

ia cuma meningkatkan jangka bertahan hidup wanita.

Now this is a very early finding

Penemuan ini masih di peringkat awal,

and we don't yet know whether it has relevance

dan kami belum tahu sama ada ia berkaitan dengan rawatan.

to clinical care.

dan kami belum tahu sama ada ia berkaitan dengan rawatan.

But it's findings like this that may provide hope

Tapi, penemuan sebeginilah yang memberikan harapan

and may provide an opportunity to save lives

dan peluang untuk menyelamatkan nyawa

of both women and men.

wanita dan lelaki.

Now, let me share with you an example

Saya mahu berkongsi sebuah contoh

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

yang mempertimbangkan faktor perbezaan jantina.

Several years ago a new lung cancer drug

Beberapa tahun yang lalu, sejenis ubat kanser peparu dinilai.

was being evaluated,

Beberapa tahun yang lalu, sejenis ubat kanser peparu dinilai.

and when the authors looked at whose tumors shrank,

Semasa pengkaji melihat tumor siapa yang mengecut,

they found that 82 percent were women.

didapati bahawa 82% daripadanya ialah wanita.

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

Ia membangkitkan soalan ini: Mengapa?

And what they found

Mereka mendapati

was that the genetic mutations that the drug targeted

bahawa mutasi genetik yang menjadi sasaran ubat itu

were far more common in women.

lebih kerap berlaku dalam kes wanita.

And what this has led to

Ia telah membawa kepada

is a more personalized approach

rawatan kanser peparu yang diperibadikan

to the treatment of lung cancer that also includes sex.

yang juga mengambil kira faktor jantina.

This is what we can accomplish

Inilah yang boleh dicapai

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

jika kita tidak merisikokan kesihatan wanita.

We know that when you invest in research,

Apabila kita melabur dalam penyelidikan,

you get results.

kita akan mendapat hasilnya.

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

Ini kadar kematian kanser payudara dari masa ke masa.

And now take a look at the death rates

Ini kadar kematian kanser peparu wanita dari masa ke masa.

from lung cancer in women over time.

Ini kadar kematian kanser peparu wanita dari masa ke masa.

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

Ini jumlah wang yang telah dilaburkan

these are the dollars invested per death --

dalam kajian kanser payudara,

and the dollars invested in lung cancer.

dan kanser peparu.

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

Pelaburan kita dalam kajian kanser payudara

has produced results.

telah memberikan hasil yang lebih baik.

They may not be fast enough,

Mungkin hasilnya belum memadai,

but it has produced results.

tapi ia telah memberikan hasil.

We can do the same

Kita boleh melabur

for lung cancer and for every other disease.

dalam kajian kanser peparu dan penyakit-penyakit lain.

So let's go back to depression.

Mari kita balik kepada kemurungan.

Depression is the number one cause

Kemurungan ialah punca utama

of disability in women in the world today.

kehilangan upaya wanita pada masa kini.

Our investigators have found

Pengkaji kami telah mendapati bahawa bahagian otak wanita dan lelaki

that there are differences in the brains

Pengkaji kami telah mendapati bahawa bahagian otak wanita dan lelaki

of women and men

yang berkaitan dengan emosi adalah berbeza.

in the areas that are connected with mood.

yang berkaitan dengan emosi adalah berbeza.

And when you put men and women

Otak subjek lelaki dan wanita diimbas dengan pengimbas MRI.

in a functional MRI scanner --

Otak subjek lelaki dan wanita diimbas dengan pengimbas MRI.

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

Pengimbas itu menunjukkan bagaimana otak berfungsi apabila ia dirangsang.

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

Mereka dimasukkan ke dalam pengimbas dan didedahkan kepada tekanan.

You can actually see the difference.

Perbezaannya dapat dilihat.

And it's findings like this

Penemuan sebeginilah

that we believe hold some of the clues

yang dipercayai dapat memberikan jawapan

for why we see these very significant sex differences

mengapa terdapat perbezaan yang ketara bagi wanita dan lelaki

in depression.

yang menderitai kemurungan.

But even though we know

Tapi, walaupun kita tahu

that these differences occur,

bahawa terdapatnya perbezaan ini,

66 percent

66% daripada kajian otak yang dimulakan dengan haiwan

of the brain research that begins in animals

66% daripada kajian otak yang dimulakan dengan haiwan

is done in either male animals

dijalankan pada haiwan jantan

or animals in whom the sex is not identified.

atau haiwan yang jantinanya tidak dikenal pasti.

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

Jadi, soalannya adalah sama:

Why leave women's health to chance?

Mengapa kita merisikokan kesihatan wanita?

And this is a question that haunts those of us

Soalan ini telah menghantui pakar-pakar

in science and medicine

dalam bidang sains dan perubatan

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

yang percaya bahawa mereka dapat memperbaik kesihatan wanita.

the health of women.

yang percaya bahawa mereka dapat memperbaik kesihatan wanita.

We know that every cell has a sex.

Kita tahu bahawa sel badan mempunyai jantina.

We know that these differences are often overlooked.

Kita tahu bahawa perbezaan ini tidak diberikan perhatian.

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

Jadi, kita tahu bahawa wanita tidak mendapat manfaat penuh

of modern science and medicine today.

daripada bidang sains dan perubatan moden.

We have the tools

Kita mempunyai peralatannya,

but we lack the collective will and momentum.

tapi kita kekurangan hasrat kolektif dan dorongan.

Women's health is an equal rights issue

Kesihatan wanita merupakan isu persamaan hak

as important as equal pay.

yang sepenting persamaan gaji.

And it's an issue of the quality

Ia juga merupakan isu kualiti

and the integrity of science and medicine.

dan integriti bidang sains dan perubatan.

(Applause)

(Tepukan)

So imagine the momentum we could achieve

Bayangkanlah dorongan yang bakal diperoleh

in advancing the health of women

dalam memperbaik kesihatan wanita

if we considered whether these sex differences were present

jika kita mempertimbangkan faktor perbezaan jantina

at the very beginning of designing research.

pada peringkat merangka kajian,

Or if we analyzed our data by sex.

atau jika kita menganalisis data berdasarkan faktor jantina.

So, people often ask me:

Orang ramai selalu menanya:

What can I do?

Apakah yang boleh saya lakukan?

And here's what I suggest:

Inilah cadangan saya:

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

Pertama, berfikir tentang kesihatan wanita

in the same way

sebagaimana anda berfikir

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

tentang hal-hal lain yang penting.

And second, and equally as important,

Kedua,

that as a woman,

sebagai seorang wanita,

you have to ask your doctor

anda perlu menanya doktor anda

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

dan doktor yang mengubati orang yang anda sayangi:

Is this disease or treatment different in women?

Adakah penyakit atau rawatan ini berbeza bagi wanita?

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

Soalan ini amat penting kerana jawapannya mungkin "ya",

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

tapi mungkin doktor anda tidak tahu atau belum tahu jawapannya.

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

Tapi jika anda menanya soalan ini, kemungkinannya besar doktor anda

go looking for the answer.

akan mencari jawapannya.

And this is so important,

Ini amat penting.

not only for ourselves,

Ia bukan saja untuk diri kita,

but for all of those whom we love.

ia juga untuk semua orang yang kita sayangi,

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

sama ada orang itu emak, anak, kakak, adik

a friend or a grandmother.

kawan atau nenek kita.

It was my grandmother's suffering

Penderitaan nenek sayalah

that inspired my work

yang mendorong saya

to improve the health of women.

untuk memperbaik kesihatan wanita.

That's her legacy.

Itulah pengaruh dia.

Our legacy can be to improve the health of women

Bagi kita, mungkin kita dapat memperbaik kesihatan wanita

for this generation

bagi generasi ini

and for generations to come.

dan generasi akan datang.

Thank you.

Terima kasih.

(Applause)

(Tepukan)