OPENING REMARKS FOR PROMOTING PATIENT POWER WORKSHOP

Ms. Kara Magsanoc-Alikpala

September 21, 2007
Astoria Plaza
Ortigas Center, Pasig City

(Ms. Kara Magsanoc-Alikpala is the founding President of I Can Serve or Information on Breast Cancer and other Services; She is a broadcast journalist working for ARD German TV and CNN and a documentarian.)

In behalf of the I Can Serve family, Welcome to all the patient groups. A big welcome ,to our friends from Media.

Thank you for taking time out for this workshop. We’ll be spending the next 2 days together and it would be nice for everyone to know each other.

(Intro each other )

It’s had to imagine we are cancer patient advocates today because getting to this point was a long journey.

It started with our diagnosis of cancer when all we could think of at that time was how to survive it. How to get from one chemotherapy to the next. How to make sure there were enough good veins for another stab of injection.

When I was much younger, my plans for my career kept changing. Maybe because I was forever curious about anything. I wanted to be a nun, a medical doctor, a psychologist, an interior designer, a detective, a writer, a writer of detective novels. Then I finally chose to become a broadcast journalist and documentarian, because perhaps I could dip my finger in any topic.

Yet never did I think that I wanted to aspire to be a cancer patient advocate!

I didn’t even know what that meant. And the same goes for you. Wala ito sa plano natin. Wala naman yan sa listahan ng mga kursong pagpipilian. There is no school to be a patient advocate.

I’ve been doing the advocacy for nearly 8 years. It’s gotten busier. I’ve met more people around the country, yet I don’t think I’ve found the formula to creating and sustaining a well-oiled organization.

Like you, we grapple with the same problems at I Can Serve—money, commitment, members being demoralized when members die, etc etc. So sometimes we feel, though we are running fast, we are running in place. And not forward.

Up to today, the level of breast cancer cancer in our country is in its infancy. We never seem to graduate from that.

Tomorrow you will meet speakers who have set up their own organizations effectively. They will not tell you

how to do it but will tell us how it worked for them.

It’s like counseling or chatting with the newly diagnose patients. We don’t really tell them what to do but tell them our own story of recovery.

So don’t feel frustrated if you think you are far off from being who are speakers are. Our circumstances are far different from theirs. We can never be like them and they can never be like us.

They will however provide you the tools to find that formula that could work for your group. You’ll have to know yourselves well, your members, your capacity and limitations, and to stay focused on a very specific, realistic mission.

By now you observed that although there are a lot of members during your special events, there are only a few driving forces in any patient group.

So this is why we need each other so we can be stronger and achieve common goals and find solutions. That’s why we at I Can Serve have expanded our goals to not just empowering women with information but to linking women cancer patient groups in the country. So whenever we raise money, whatever we do, we assure , will involve all of you, our sisters in the advocacy.

We cannot do it alone. We cannot afford to compete. But that’s the nice thing about this community unlike others. Having faced death and discovering the value of time, we have sloughed off intrigue and envy or shall I say we have kept it to a minimum.

So let’s stay in touch. Let’s keep an open mind to the new things we will hear in the workshop and the old things that need relearning. We will post the transcripts of the workshop on the I Can Serve website, perhaps in the next 2 or 3 months. We will let you know.

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It’s awesome to think that every one of you who seemed powerless during your cancer episode, now has the power to make the life of another patient better than she imagined, maybe even better than her doctors imagined. You help her recover a life that seems out of control.

The most important thing you give is hope, no matter the prognosis. Hope that doesn’t necessarily mean a cure. Through your compassion and concern, you would’ve initiated complete healing for her and her family. That, in my mind is better than any cure to cancer.

Don’t under estimate the work you and your group have done. I have seen some inroads in the past years.

Seven years ago, a friend from Bristol Meyers who was a big believer of patient advocacy kept inviting me to their forums. She inserted me in the panel of many medical conventions. There were lively discussions with the doctors in the panel, but no one in the audience had a question for me.

The host would always make up a question for me since no one seemed interested in what I had to say. At palagi na lang ang tanong, how did you cope with breast cancer? Hindi na naiba yung tanong.

In another instance, an oncologist friend once told me, naku yang mga support groups na yan nag-i interfere with the doctor’s work.

Obviously today, all that has changed. Now doctors call us to refer patients.. And, with a vengeance, all of us seem to be interesting as we’ve become sought after media interviewees, guests of honor at doctor’s gatherings. Even keynote speaker at medical conventions.

But ye,s there is a long way to go. There is no infrastructure in the country that will make our advocacy easier. Cancer is not in the consciousness of our national leaders or the national budget.

There is no government body nor big private organization ,or corporation committed to elevating our advocacy.

So we have to do it ourselves. That is why today is historical, it’s the first time we take a step as a group to take the power within us to greater heights.

God Bless us all and please stay healthy!