Three Activists on Awareness Months

February is National Heart Health Month, April is National Autism Awareness Month and October is National Breast Cancer Awareness Month.  How do those who are affected feel about these awareness campaigns?

 

Health Communications, health literacy and social sciences tweetchat invited three health activists to begin to answer this question.

 

AnneMarie Ciccarella (@chemobrainfog) started the discussion.

Speaking for myself and likely many others, October “awareness” has strangled advances in breast cancer…October breast cancer awareness is the greatest success story causing the MOST damage.  When started, it was important. Stigma attached to br ca had to be lifted. The radical surgeries had to be addressed… That was accomplished fairly early on. Now, it’s over 20 years of little **MEANINGFUL** progress and NONE with metastatic patients.  Speaking for breast cancer, we are AWARE, we’ve BEEN aware and it’s time to switch gears. too rooted in status quo & now very hard

                A participant asked, “Why is metastatic segregated out?  Why is there no progress?”

[Those with metastatic disease ]…are the dirty little secret .they taint the ribbon of success.  We’ve accepted “early detection” as good enough and it’s not. No new treatment advances. I had same chemo cocktail in 2006 as mom in 1987.  There is too much resource going to awareness, not enough for actual research.

I also make sure people understand there is NO CURE for breast cancer, it’s not a good cancer and even if caught early, there is no guarantee.

 

Katrina Moody (@katrinamoody) added to the discussion from the perspective of a mother of 3 children with autism.

“We promote Autism, Epilepsy and General special needs-related awareness efforts at the Café  (my site).

     She was asked if she felt that having a blog was “action.”

 It’s not – which is why I started the Awareness in Action campaign – to focus on ways for people to help.  The problem is that traditional awareness drives tend to concentrate on “awareness” but not so much on acting to help. I think it’s the difference between passive sharing and actual engagement.  Too many campaigns with no goals mean that there are lots of fuzzy pictures and sayings, hardly any action.   We still have the fuzzy pictures *grins* but are focusing on goals, actions for those involved to take.  We need to focus on action – help people see where they can take action in small and large ways.

Katherine Leon, a survivor of Spontaneous Coronary Artery Dissection (SCAD) also described her experiences with Awareness Months.

 

I have done one Komen Walk, supporedt our school autism efforts, work many hours with WomenHeart: National Coalition for Women with Heart Disease.”  This year, in March, I took heart health awareness to kids at school. Every day is a good day to focus on heart health.

With SCAD, [we are] attempting to do awareness and action at same time. Social media [is]key. I did awareness 5K for fund raising and a conference .

 

AnneMarie and Katherine realized that there is a difference between Breast Cancer and SCAD.

Katherine stated , “Right now SCAD is very grassroots. [We don’t have  corporate sponsors], so [we are] networking [to find]  SCAD survivors worldwide. “

AnneMarie remarked that she is concerned about the involvement of corporate sponsors in Breast Cancer Awareness Month.   “The pink stuff is all about the companies…  I am determined to change the conversation with breast cancer.  She summed it up, “SCAD needs awareness! We didn’t really need pink bats last Sunday, did we?”

One participant thought that  awareness months help find those dynamic people out there that are willing to help.

 

Katrina agreed that Awareness Months help in finding people with a newly recognized passion – the key is helping them act!

 

Another participant noted that,

“These campaigns are getting so complex and expensive that I’m not sure how much they yield for what’s important to patients. I think once “awareness” gets to be a routine yearly thing for each entity, it loses value.  The question is why do we do it. Are we truly not aware enough about breast cancer or autism? I think about the two w/o “months.  And all of the repetition inactivates me!”

 

When asked about taking action each guest contributed ideas.

Katherine stated that we

“Need to tie awareness to research.  SCAD Research is nonprofit educating/promoting/fundraising all at once. I really love RESEARCH.  Bob Alico, director of SCAD Research, says action comes from getting people to think “this can happen to me, [or] to my loved one.”

 Katherine initiated research in SCAD over a number of years.  She  motivated the  Mayo Clinic to  conduct research on SCAD.  “WomenHeart Inspire is key to “finding” survivors. SCAD survivors find  [the SCAD] group thru WomenHeart/Inspire, apply to Mayo research, learn about SCAD http://t.co/1tCXWqBE,

 

It is “Really frustrating when SCAD donations go to the general fund of the A[merican] H[eart] A[ssociation].  When you donate the Key is getting money to researchers, or at least organization with SCAD-specific program.

AnneMarie said,

“Find out “Who’s raising the money, how much is being donated and what is the charity doing? I  began to speak out about not being “a brand” for someone’s bottom line.  [I} Got active with Army of Women and Dr Susan Love.  Another thing I am trying to do is get the word out to be wise “consumers” with our donor dollars.

 “I don’t think people realize they can donate directly to researchers. I guess that’s the way I’ve been TRYING to take action.  [You] Don’t need to give money to any organization to take a cut . For example: they do high risk/high reward research and you can SPECIFY where you want your money to go http://t.co/i0w1T3uE .  This link to Rock Research Labs lets you decide!

Every major hospital has research areas. If research is what calls you, I know of a number of places that do research.  Here’s a blog post I wrote about donating …. http://t.co/dM1O4iwD  Cold Spring Harbor Lab may have a similar program. They do high risk high reward research, too.”

A participant suggested that “if you’re donating for research, get name of people doing research. Call and ask where to donate.”

 

Another participant wondered, “Realistically, unless you have it, a family member has it, or a close friend, do people really care? Will awareness change that?”

 

Yet nother participant wondered if doing something for others always means money.

 

According to Katrina, “No. … encouragement and support don’t have to always include money – I don’t think – on a personal level. Find ways to help patients/families directly, more personal involvement”

AnneMarie volunteers in the hospital visiting surgical patients.   Don’t ask “what can I do” Just Do it! Drive people to treatment. Make casseroles  for families.

One of the participants stated that there needed to be an Awareness Month on health disparities.

“ I’ll scream for awareness about them til people are sick of hearing and do something .“If goal is to make life better for sufferers, find out who delivers direct services to pts/families .  I’d rather give money to a social work department fund for transportation, medications, etc.  Find out what keeps people from getting what they need. It’s usually something we dismiss or don’t realize  The smaller and more personal, the better. transportation, resources, ability to leave an ill family member long enough to get out of house.”

The final thought reiterated by all was an admonishment to all of us:

 

“Don’t underestimate your capacity to make a difference. ”