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C -- all right let's talk patient care Shelly -- and -- from a person who really has an interest in perspective she's a survivor.
Kathy JC is here she's the founder and chief operating officer of the multiple.
Milo not research foundation and multiple myeloma research consortium that this is C this morning thanks for being here thank you for having me now I've read some of your notes I want you to share first with with our audience what your story is just -- health.
Why it's okay so I was diagnosed with multiple myeloma and 1996.
At that time I was told the disease was 100% -- and I would live about three years and you were 37 minutes I was -- was.
A mom a mom with her little one year old daughter and and that peak of my career everything was great and life came crashing down around me to be honest with you.
So what did you do -- it was a very tough diagnosis I think many cancers today especially the uncommon ones have a very high mortality rate.
So what he -- to find out that -- cancer is one thing to find out you have one.
It's a money honey you -- tornado ended its three years I think that's beyond crashing.
So I knew I had to do some things and I think my background having.
-- in the pharmaceutical industry in and running world -- operations for pharmaceutical company gave me the perspective of my goodness we need to find new treatments -- can and I mean you push for new treatments for that particular ailment that but you also.
Want patients to find out that they hold some power.
Absolutely I think sell much has changed since the time I was diagnosed I mean that was.
Sixteen years a doll and I think.
Then major changes have been the fact that we can now do genomic sequencing quickly and and affordably.
The fact that patients have access to their electronic health records and can share them and religion and now we have social networking so patients can mobilize with each other and think about it when I was diagnosed there -- no Internet today yeah.
You know why I run every year in whatever form is near me in the Susan G.
Race and sometimes it's a walk that's in my neighborhood when I lived in Minnesota actually it was a snow machine race I don't wanna really managers and it -- -- -- I but I.
Actually they -- six and a half.
But it felt like well but my point is that social networking really has made survival.
In every sense of the word so much -- so did.
-- right I think he gave a great example -- when we look at.
Even the events we do we can send out through FaceBook and other vehicles come to the event joining us and that's great but I think.
Where it will go over time is if you miss certain genomic signature in your cancer or certain sub segment.
You want to talk to patients that have that same.
Type of cancer that you do.
And I think social networking allows you to connect with them which is really great so this changed -- patient care since you were -- -- I would say everything but I think the most important piece is the decisions are being left to the patients.
You really have to empower yourself.
More now than ever doctors -- -- you cutting it is a fully used to be that doctors had a lot of the control.
That your information was held in there.
Filing cabinets and in their offices and it is you know you had that you had to work very closely examining it now you can get those things digitally tomorrow you can you can get your patient records it's -- -- go online and look for patients that look like you and I understand.
What kind of treatments are they getting you can.
Have access to all the medical -- you can become an amazing champion looking for the right drugs of rape trial and Kathy.
-- mean to put you on the political spot but I can't have -- here talking about this without at least broaching the subject.
Are you concerned at all when you talk about patients having power.
That that they may lose some of that power with his Health Care Reform legislation that that -- at least some thoughts to others in the room.
I think it's always a challenge but I think the great thing about the way patients are acting today is everything.
Is out on a social platforms so the data is going to be available to you so that the choices for a patient to look and say.
This is my tissue this is my data.
This is my journey.
And I'm gonna want be the one to make the decisions with my doctors is long -- looking at data.
And educating yourself and making the best decisions.
You'll be okay but you've got to make sure you -- watching all of these trends and taking advantage of them I can't I can't tell you how many times I look at -- -- say.
Make sure you go into the right center to right doctor for your cancer make sure.
You know what drugs are available on consumer clinical trials will be available to you that's so hot that you have to talk with your doctor about.
What are you doing to give patients more power over there are recovering well in the short term what we do is you know we've built a website where we provide a tremendous amount of information to them.
In addition we we push it out through FaceBook linked in any vehicle that you can possibly imagine even.
Online if decision register we say use information you disease -- treatments and -- Put all that information out to them but longer term we are building a community where patients and have.
A certain sub segment of my -- will talk to other patients it looks like that talked to researchers.
Who care about that sub segment.
Help you find the right clinical trial help you find the right treatment.
And that's going to be a big trend for the future.
You know as we move forward and -- cute they're all these opportunities to take part to help raise money for research like for breast cancer and so and so -- Is there one part of the puzzle that seems to be missing that you can sort of find yourself screaming in an empty -- about I think the hardest part is building the collaborative models which is probably where we shine the most.
We as a foundation I trusted third party.
So what we do is we try to bring together the academic scientists the community clinicians -- pharmaceutical companies the Biotech firms over time insurance companies.
And we say what is the plan to cure this disease.
And you have to have a trusted third party that has the patient's interest in mind at all times for -- -- right plan.
I've never heard of a -- -- walk.
Oh yeah absolutely I usually needed to whatever is go in there -- girls that.
So how what do you need the public to be what do you want the public to do not just particular to this illness but in wanna.
01 member I would make sure that patients start to understand the importance of knowing what's happening with your tissue as -- did you diagnose that tissue is cold it's very precious.
Knowing what's happening with the data on new disease over time have been working with your doctor to make.
The best decisions you possibly can.
Reaching out to foundations that might be able to help you -- Tell you one question about going to the doctor because I I'm very tight and think you probably noticed that I know like every -- -- piece of technology I think people think I'm not listening to that I didn't.
I'm multitasking all the time.
We go into a doctor's office with all this information -- eyes glaze over because like my pediatrician says he's had enough of me.
And you know -- -- -- bullying in the coming and we have like a medical eighteen yard box and I worked at for information that I don't know doctor's office like take out a spreadsheet.
I say I know including both of those when you Andy for me I mean it's kind of hard to inject all -- information even.
I sound just like to use I think -- -- the doctors crazy on as well are accurate idea but I think the important part is.
The doctors are really could do appreciate the patients taking an active and -- -- Even here on colleges -- you seen all kinds of cancer patients all day long.
So you know how many multiple myeloma patients may you be seeing -- -- -- especially out in the community right.
So I think -- -- -- they appreciate the patients getting his knowledge getting the information and coming in and helping them to make decisions with them.
So that's the kind of doctor and you actually want someone who's somewhat patient.
With the type bag patient paid out exactly right captain JC.
Founder and chief operating officer of the multiple myeloma research foundation and happy here at the same -- -- you.
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