The Difference Only Planned Parenthood Can Make

***UPDATE — APRIL 14, 2017*** 

As referenced in this New York Times article, Trump Signs Law Taking Aim at Planned Parenthood Funding, President Trump “signed legislation on Thursday [April 13] aimed at cutting off federal funding to Planned Parenthood.”

***END OF UPDATE, NOT THE END OF MY ADVOCACY”***

Here is my original April 2, 2017 post:

I have received services from Planned Parenthood precisely once, but that one visit places me among the “one in five” women in America who have visited Planned Parenthood at least once. As I alluded to in this post when I disclosed my experience of being tested for HIV, I tended in my early 20s to be fanatically cautious. Just like my it was probably scientifically impossible for the activities I was engaging in to expose me to HIV, neither did I technically need the diaphragm I was fitted for at Planned Parenthood.

Fast forward to 2017. At 52, I am a member of a demographic that does technically need services such as testing and treatment for HIV and other sexually transmitted infections. Opponents of Planned Parenthood try to paint a picture of an organization which zealously lures women into having abortions (fact: abortions account for less than five percent of Planned Parenthood’s services). These opponents support the rollback of Title X program funding, which in turn allows states to withhold certain funds to women’s health clinics.

We all need to understand the difference Planned Parenthood actually makes.

Planned Parenthood Advocacy

Middle-Aged and Elderly People Need STD Testing and Treatment

According to the CDC, nearly 1 in 4 persons living with HIV/AIDS in the United States is 50 or older.

Our issues around STDs are not limited to HIV risk, however, and they incorporate our emotions as well as our bodies.

Medscape breaks down the psychosocial factors behind our new middle-aged realities:

  • Divorce rates are increasing; in addition, the rate of people who remain unmarried is rising.
  • Midlife “repartnering” is increasing
  • As we stay healthier longer, our potential for engagement in sexual activity increases.

Medscape also lists the possibility, even though the research base is more shallow, that middle-aged women place a higher priority on intimacy over sexual health, leaving them more open to risk. In addition, older people may associate sexual risk-taking with their adolescent years and may ignore facts and dangers that they face.

Planned Parenthood Advocacy

Planned Parenthood Is An Asset for Women’s Health

Although you can learn the basics of the high-quality, affordable health care Planned Parenthood provides to women, men, and young people here, let’s focus for a minute on our middle aged and aging people facing a new sexual behavior reality:

Every year, Planned Parenthood provides more than 4.2 million tests and treatments for sexually transmitted infections, including more than 650,000 HIV tests.

 

Why Planned Parenthood Needs Our Support

Fifty-four percent of Planned Parenthood health centers are in health professional shortage areas, rural or medically underserved areas. Planned Parenthood health centers provide primary and preventive health care to many who otherwise would have nowhere to turn for care.

In 2014, Planned Parenthood health centers saw 2.5 million patients and provided more than 4 million sexually transmitted tests and treatment, more than 360,000 breast exams, more than 270,000 Pap tests, and birth control for 2 million people. Of Planned Parenthood patients in 2014, 15 percent were Black and 23 percent were Latino.

Although current efforts to defund Planned Parenthood cite Community Health Centers (CHCs) as a viable alternative health care provider for contraceptive and sexual health education needs, CHCs, while doing their own critical work for the health of our fellow Americans, are not equipped to replace Planned Parenthood.

Stepping Back and Taking the Long View

Right now, in April 2017, the dialogue around the future of Planned Parenthood is bookended on one side by supporters who strongly believe there is empirical evidence that blocking patients from accessing care at Planned Parenthood comes at too high a cost.

On the other end, opponents believe sentiments like these expressed by Senator Ted Cruz and Dr. Alveda King: “millions of abortions make Planned Parenthood a business that the federal government does not need to be funding with our tax dollars.”

Without Planned Parenthood, women would be less healthy, especially women in medically underserved areas. Planned Parenthood makes a difference.

That difference is what Katharine Hepburn’s republican mother sought when she helped found the Connecticut Birth Control League in 1920.

That difference is what Republican Barry Goldwater’s wife, Peggy, sought when she helped organize Phoenix’s first family planning clinic in 1937.

That difference is ostensibly what Prescott Bush (George H.W.’s father and George W.’s/Jeb’s grandfather) sought when he served as treasurer of a nationwide Planned Parenthood campaign in 1947.

That difference is possibly what then-Congressman George H.W. Bush sought in a 1968 address to Congress in which he advocated for government support of family planning programs, referring to the “tragedy of unwanted children and of parents whose productivity is impaired by children they never desired.”

That difference is what President Nixon and then-Congressman George H.W. bush sought when they supported Title X upon its introduction (and subsequent passage) in 1970.

That difference is what republican Barry Goldwater intended when he supported upholding Roe vs. Wade in 1983.

“That Difference” Changed Lives

It’s one thing to cite surprising moments in history that demonstrate “that difference” made by Planned Parenthood. It’s yet another to know that, for countless individual, real life flesh and blood women, Planned Parenthood impacted their lives for the better:

People like Bethany, who said, “Their clinics enabled me to maintain my reproductive health, and control over my body at a time when I could never have afforded to have a child.”

People like the woman whose breast lump was diagnosed and treated by Planned Parenthood, who shared, “Thank-you, Planned Parenthood, for understanding that nothing is more important than your health, no matter what your socioeconomic status is.”

(The source for the above two quotes is this Huffington Post article.)

People like Cassandra, who wrote for Grounded Parents that Planned Parenthood’s early diagnosis and treatment of her Human Papilloma Virus (HPV) saved her life. She writes:

When I hear politicians talk about defunding Planned Parenthood what I hear is that they don’t understand the services that Planned Parenthood provides for both men and women. What I hear is that they don’t care if both men and women have access to low-cost reproductive health care.

How You Can Make “That Difference” For Yourself and Others

Please tell your legislator why “that difference” is so much broader than many opponents would have them believe. Call them (it’s easy!) and tell them not to defund care at Planned Parenthood Centers. There are several resources here.

Planned Parenthood Advocacy

Here are some more resources:

Birth Control Coverage Should Always Be Guaranteed

There’s a Long History of Republicans Supporting Planned Parenthood—Why Is No One Talking About It?

Why I’m a Christian Who (Still) Supports Planned Parenthood

8 New Words In an Evolving Language

(This post contains affiliate links, which means that if you click on one of the product links, I’ll receive compensation.)

I love language. I can’t remember a time when I was not an avid reader, and I’ve always enjoyed wordplay.

I can be a stickler about many things English-language related (hello, beloved Oxford comma), but I recognize that the English language is a living, breathing entity, not a static one. Social media has, to me, put the evolution of English on hyperdrive.

I think of all of the words consigned to word graveyard because a hashtag takes their place. For example, in this tweet…

…an “I” and an “am” and a “so” all remained home in the word farm stable, unused, because a hashtag did all the heavy lifting for a passage which would have otherwise read “After an intense homework session, finally going to bed. I am so tired.” (I do this frequently too, I just couldn’t find an example when writing this post, so thanks @stinger444 for the perfect example.)

New Words in an Evolving Language

The way our language usage has changed due to Twitter and other forms of social media is a topic for a whole post of its own. What I want to talk about today is new words which I have come across in the last year that made me go, “HUH….”

In some cases, they are words that are a bit ingenious in representing a particular concept. In others, they (to me) signal either a new humanitarian sensitivity or, in some cases, a walking on eggshells nod to political correctness.

Prior to writing this post, I looked up “how a word gets into the dictionary” which has a great infographic detailing the routes words take to being “official.” For each word, I’ll let you know if it’s in the dictionary yet and I’ll share a few thoughts on the word. They’re not presented in any particular order. I just added them to a draft post as I ran across them.

Previvor

In the Merriam-Webster dictionary? NO

I don’t recall where I first read this word, but I think it may have been in reference to Angelina Jolie in an article like this one from the Washington Post.

previvor is the survivor of a predisposition to cancer who has not had the disease, such as a BRCA1 or BRCA2 mutation or other genes related to Hereditary Breast and Ovarian Cancer (HBOC).

This is one of those words I want to be aware of. If someone uses it in a face-to-face conversation, I will be more prepared to understand the fears/emotions/challenges inherent in the fact that they are a previvor. Likewise, if someone uses it on social media, I won’t have to ask “what’s that?” and can respond in an informed and empathetic way.

If you are a previvor, this site, FORCE (Facing Our Risk of Cancer Empowered), may be of support.

Latinx

In the Merriam-Webster dictionary? NO

I don’t recall where I first read this word either, but for quite some time I thought it was an unusual typo and I could NOT figure out how to pronounce it. It’s not a typo. (Thanks, Complex, for cluing me in.)

According to Complex (linked above), Latinx is pronounced “La-TEEN-ex” and is a “gender-inclusive way of referring to people of Latin American descent.” In addition, “used by activists and some academics, the term is gaining traction among the general public, after having been featured in publications such as NPR to Latina.”

(By the way, the author of the Complex piece on Latinx, @yesipadilla, refers to herself as “Xicanx” so I think I see a trend!).

I’m glad I now know that Latinx is not a typo. I know that if someone uses it, they are explaining something important to them about their identity and how they want to be seen in the world. It’s one of those words that reminds us not to make assumptions.

It’s not like I have any authority to recommend a great site for the Latinx community, but since my work related to the CDC’s efforts around HIV Awareness is so important to me, I’ll highlight one of the first places I heard about the term Latinx: National Latinx AIDS Awareness Day (October 15). If you can recommend a general resource for those who identify as Latinx, I’d love to know about it.

Cisgender

In the Merriam-Webster dictionary? YES

The first place I really recall hearing this word frequently was at the We Won’t Wait 2016 conference in September, which had several sessions related to issues facing the transgender and LGBTQIA+ communities. Then I read Beyond Magenta: Transgender Teens Speak Out, a book which used this term, and decided I really needed to figure out what the reference meant.

According to Merriam-Webster, cisgender means of, relating to, or being a person whose gender identity corresponds with the sex the person had or was identified as having at birth. For examples of how it is used, read the full definition here.

I have to be honest. The word “cisgender” sits funny on my ears. BUT I can see why it is useful, as part of the current dialogue about gender identity. There was a teen highlighted in Beyond Magenta who was a boy transitioning to a girl who went to an all-boys school. It sort of made me wonder about the world I’ve always known, which so tidily segregated boys from girls. Boys’ schools, girls’ schools, boys’ teams, girls’ teams. Things are changing. People who find themselves somewhere in the middle ground between “I 100% identify as male” and “I 100% identify as female” have a language to more accurately reflect the fact that they are on a journey whose terminology does not provide definition at times. Another area where I can converse in a more informed way now that I know.

To learn more about how to have a dialogue about gender identity, this is a helpful resource. It’s directed at teens but if you’re like me, your knowledge about gender issues may NOT correlate with your chronological age. We all need to start somewhere.

Cultural Appropriation

In the Merriam-Webster dictionary? NO

The first place I recall hearing this phrase was in a post about a Disney-themed costume. I believe it was an article like this one about a Moana costume. The term “cultural appropriation” has continued to assert itself in the content I read. I don’t recall if the exact term was used, but if not the concept itself was covered in Waking Up White, and Finding Myself in the Story of Race by Debby Irving.

In About News, Susan Scafidi defines Cultural Appropriation as “Taking intellectual property, traditional knowledge, cultural expressions, or artifacts from someone else’s culture without permission. This can include unauthorized use of another culture’s dance, dress, music, language, folklore, cuisine, traditional medicine, religious symbols, etc. It’s most likely to be harmful when the source community is a minority group that has been oppressed or exploited in other ways or when the object of appropriation is particularly sensitive, e.g. sacred objects.”

I struggle with this one (but I do, for starters, understand it and believe awareness is key). If you know me at all, you know I am a proud double alum of Florida State University. Since I became a freshman in 1982 through now, I have seen changes: Lady Scalphunters are now Lady Spirithunters, for example. I realize it was disingenuous to parrot back what I was always told: “well the Seminole nation is okay with it.” But rightly or wrongly I still embrace Seminole fan paraphernalia and …… well, it’s a work in progress.

This resource I found about cultural appropriation was the best kind of resource: it involves your mind while engaging you in an activity beyond reading. I present: Cultural Appropriation Bingo from Dr. Sheila Addison.

Phygital

In the Merriam-Webster dictionary? NO

I learned the term Phygital from a Spin Sucks blog post, Four Phygital Marketing Ideas to Grow Your Business, by @openagentoz.

Phygital customer expects a brand to combine the physical and the digital for a best-of-both-worlds experience

Honestly, after Cultural Appropriation, I’m just happy to have a word that isn’t laden with challenge to discuss (but hold on to your physical hats and enjoy this section because Othering is coming up next).

Knowing the word Phygital makes me feel up to date on marketing trends. I personally *love* being a consumer contributor of Social Snaps, such as this Fitbit/Giant Microbes/Shot at Life Instagram post.

Evolving Language

For more about all things “phygital,” transport yourself way back to 2012 and read this.

Othering

In the Merriam-Webster dictionary? NO

There are No Others defines Othering as “any action by which an individual or group becomes mentally classified in somebody’s mind as “not one of us.” Rather than always remembering that every person is a complex bundle of emotions, ideas, motivations, reflexes, priorities, and many other subtle aspects, it’s sometimes easier to dismiss them as being in some way less human, and less worthy of respect and dignity, than we are.”

This is another term that is new to me. I think it was in Waking Up White (linked above), but I read the audio and can’t easily look it back up. Regardless, I’m hearing it often and my consciousness is raised. This is somewhat tied into the compulsion to “help” that I grew up with. I *think* my support of Unbound is sensitive to “othering” but how many times have I written about “those in poverty” and really done so in a way that respects each individual’s worth?

There are some good resources for learning about “othering” here.

Carefrontation

In the Merriam-Webster dictionary? NO

I first heard this term used by Dan Negroni, author of Chasing Relevance. Although I can’t find that reference anymore (why on earth didn’t I  hang on to the link then?!, a twitter search turns up lots of instances).

As defined on Oprah.comCarefrontation is “putting our heads together to reach a common goal.” Read the complete post here.

I know I avoid confrontation, and by doing so lose out on opportunities to have peace of mind and to actually get things I want. Maybe there’s something to be said for, as the Oprah.com article recommends, implementing a three-point plan of preparing with care, offering an invitation to talk, and practicing no-blame talking and listening.

Where to find more about Carefrontations? I could link to this but then I would have to add “choice points” to my list and I feel like I’m at capacity right now. 😉 Here’s a post about it from Great Leadership that’s a good read.

Fungineering 

In the Merriam-Webster dictionary? NO

I first heard this term used in this New York Times book review of Why Are Americans So Anxious? related to Zappo’s.

Fungineering at Zappo’s is defined in this article as “a kind of events-planning pep squad.”

I just like “fungineering” because it’s a neat word mashup and portrays some of the out-of-the-box ways organizations can bring humor and joy to the workplace. However, I was alarmed at the reference in the book review to how the author seeks input from Zappo’s happiness evangelist Tony Hsieh: “Whippman has a weird email exchange with Hsieh in which he uses lots of exclamation points and refers to the ‘holacracy’ and ‘brand aura’ (she doesn’t know and neither do I). But he declines to meet with her because he doesn’t prioritize people he feels ‘drained by after I interact with them,’ he writes.”

Where to find more about fungineering? I’m guessing you might not want to contact Tony Hsieh directly but if you’re in College Station, TX, this may be an option to explore.

WHAT NEW WORD WOULD YOU ADD TO THIS LIST? 

Evolving Language

Aging and HIV: Why One More Test Matters

“Are you HAVING sex?”

My gynecologist asked me this question at a routine checkup to monitor my use of hormones to deal with the symptoms of early menopause.

In my head, my answer was, “well I’m married so why do you need to ask?” But his question indicated that he was making no assumptions. Me saying the medicine was working in the absence of being sexually active would be misleading. His question was a good one.

National HIV/AIDS and Aging Awareness Day

HIV PreventionAlthough assumptions are dangerous any time a medical professional rules out the need for HIV testing based on how a patient looks or acts, they are especially dangerous when the patient is 50 or older. Today, National HIV/AIDS and Aging Awareness Day, is a day to make sure Americans ages 50 and above have full and complete access to HIV education, testing, and treatment.

Cynthia’s Mom

Cynthia shared her experience with me of having to insist her mother’s physician test her mom for HIV back in 1986. Her mom had been ill with pneumonia for a long time, and had had every other possible test.HIV Prevention

RUN THAT HIV TEST, demanded Cynthia.

It turns out her mom, who was in her mid-50s at the time, was HIV positive.

Her doctor had not thought Cynthia’s mom was the type of patient who was likely to be at risk for HIV.

There’s no “type of patient” likely to be at risk for HIV.

Consider this:

  • People aged 55 and older accounted for 26% of all Americans living with diagnosed or undiagnosed HIV infection in 2013.
  • People aged 50 and older have the same HIV risk factors as younger people, but may be less aware of their HIV risk factors.
  • Older Americans are more likely to be diagnosed with HIV infection later in the course of their disease.

More from Cynthia in her own words:

We need to replace “MAY BE” with “ARE”

When I asked Cynthia, who works frequently with people ages 50 and above to educate them about HIV and encourage them to get tested, I asked about the main message I needed to communicate.

I said, “what I need to do is remind my 50-ish year old peers that their parents may still be sexually active, right?”

Her response?

“Not MAY BE sexually active, ARE sexually active.”

She is right. This is not the time to hesitate; it is the time to be specific, concrete, and to the point.

According to the CDC, many older people are sexually active, including those living with HIV, and may have the same HIV risk factors as younger people, including a lack of knowledge about HIV and how to prevent getting it, as well as having multiple sex partners. Older people also face unique issues:

  • Many widowed and divorced people are dating again. They may be less aware of their risks for HIV than younger people, believing HIV is not an issue for older people. Thus, they may be less likely to protect themselves.
  • Women who no longer worry about becoming pregnant may be less likely to use a condom and to practice safer sex. Age-related thinning and dryness of vaginal tissue may raise older women’s risk for HIV infection.
  • Although they visit their doctors more frequently, older people are less likely than younger people to discuss their sexual habits or drug use with their doctors. In addition, doctors are less likely to ask their older patients about these issues.

A Physician Knows

Dr. Cyneetha Strong, a family practice physician in Tallahassee, FL, shared:

If you are in a demographic that “doesn’t seem to be at risk for contracting HIV” you could have a delay in testing and diagnosis. The elderly is a growing demographic of new cases of HIV. Because of our hang ups about sexuality, it is difficult to think of the elderly engaging in high-risk sexual behaviors.

The advent of Viagra has played a significant role in increasing the spread of STIs [sexually transmitted infections]. Some retirement communities have been hotbeds (no pun intended) of disease. I will admit that I even have trouble broaching the topic with some “little old ladies.” I have also been shocked at some folks activities. So, that’s the problem.

One solution that has been proposed has been a recommendation of universal testing. Every adult, regardless of age or situation should be tested at least once. Also, it has been proposed to remove the requirement of a separate consent form for HIV testing, so providers could routinely test for HIV like we do for so many other things. Just like you might get tested for cholesterol, diabetes, or chlamydia as part of routine care, HIV could be done as well. The stigma that still goes along with the diagnosis makes testing without separate consent unlikely in the near future.

Why Are There Additional Challenges for Those 50 and Older?

Through Cynthia’s story as the daughter of an HIV positive aging woman (and as an HIV positive person herself), and Dr. Strong’s comments about her experience providing care to aging people at risk of HIV infection, several of the specific issues faced by aging Americans repeat themselves. The issues fall into two main categories: age-related risk factors and barriers to prevention.

Age-related risk factors:

  • Lack of knowledge
  • Biological risk factors
  • Risky sexual behavior
  • Accessibility of erectile dysfunction medications

Barriers to prevention:

  • Aging stereotypes
  • Low HIV testing rates
  • Underdiagnosis of HIV/AIDS
  • Late diagnosis of HIV infection
  • Discrimination
  • Internalized stigma

For details on each of these risks, visit this link.

Support, Don’t Stigmatize

If you watched the video above with Cynthia and Walter, you heard Walter explain what he told the participants in the treatment center where he worked when an opportunity arose to be tested for HIV:

I’m not like y’all; I don’t do what you do.

Stigma crops up in so many different ways. For Walter, he did not think his behaviors, as compared to those of the people in recovery from drug addiction, made him likely to be HIV positive.

It turns out he was more like them than he thought; he tested positive.

When it comes to your aging friends and relatives, cast aside stigma, assume they ARE sexually active (and therefore at risk) rather than that they MAY be sexually active, and you may save their life.

Being HIV positive is no longer a death sentence at all, but the longer someone waits to be tested the less options they have to get on treatment and thrive.

Here’s how you can help:

Be clear yet respectful when discussing HIV risk factors with aging adults. If you’re at a loss for words, there are some great conversation starters in How to Talk to Grandma and Grandpa About HIV.

It’s a longer-term action, but support efforts to have HIV Testing integrated into the standard laboratory tests that are conducted as part of annual physician exams such as blood glucose and cholesterol. Learn more in Routine HIV Testing in Older Adults.

I love the way the Diverse Elders Coalition expresses their wish for the outcome of this year’s National HIV/AIDS and Aging Awareness Day: we envision a present where no elder has to face HIV without support, and a future where no elder has to face HIV at all.

HIV Prevention

Cynthia told me her mom often feels that aging people who are HIV positive do not have their “own” support or attention. None of us can solve that problem overnight. What we can do, however, is give each aging adult who is at risk for HIV their own chance at maintaining their health.

We can help them get their own “one more test,” an HIV test.

This post is made possible by support from the Let’s Stop HIV Together campaign. All opinions are my own.

Many thanks to Cynthia A., Dr. Strong, and Kaitlin Sovich for their assistance with this post.

 

Coffee Grounds, Goats, and Soap (A #LiveUnlimited Post)

What does “living unlimited” mean to you?

When the Muscular Dystrophy Association began its 2016 summer campaign, #LiveUnlimited, I shared this picture on social media (which generated $1 from a generous sponsor).

What Does it Mean to #LiveUnlimited?

loved the ziplining experience at North Georgia Canopy Tours. There was a moment during one of the longer zips that felt spiritual. I was suspended high above a gorge, zipping along rapidly, all thoughts of mundane worries as well as life’s bigger problems stripped away as I flew.

Living Unlimited Is Conceived in Smaller Moments

I have become acquainted with Linda Freeman through my work at Weaving Influence. Every week, I help share her blog posts on social media. With every post (as well as our phone conversations and emails), I see her take something common as a starting point and nurture it into something BIG. Here are three examples:

Goats

Linda is incorporating goats into her work with the Kratie Province in Cambodia in several ways. She and her team are working to start a Goat Bank. Selected province families will receive goats to use for milk, and as the goats reproduce, they will donate a kid back to the bank to perpetuate the availability of goats for their fellow province residents. It’s not just the goat bank, though. There is the possibility of a biogas digester using goat and human waste, as well as lots of goat milk to be made into organic body products.

Leftover Coffee Grounds 

Did you know you can incorporate leftover coffee grounds into facial scrubs? I didn’t either until Linda and her KidPower Organics line started including them in their Vanilla Latte Coffee Scrub. (Linda has also shown the Kratie Province residents how to utilize used coffee grounds to help plants grow.)

Clean Water and Two Hands

According to the CDC, handwashing with soap could protect about 1 out of every 3 young children who get sick with diarrhea and almost 1 out of 5 young children with respiratory infections like pneumonia. Linda provides more details about why it works in  this post. With her KidPower Handwashing Project, she explains how ambassadors will be appointed and trained from within the community. They will receive small stipends via the sales of Kid Power Organics as well as private donations to Cambodian Care.

Goats, coffee grounds, water. So simple, yet with such profound potential. These are three of Linda’s team’s projects, but the list is lengthy. There are

  • KidPower2015 with its bicycle generators and impact on families affected by incarceration through Children of Inmates
  • The NeighborhoodHELP program with its medical outreach in underserved communities which brings the household-based framework to life
  • The Future Ready program in Miami Dade County which uses an evidence-based campaign to help junior high and high school students understand the consequences associated with at-risk behaviors that lead to HIV/AIDS, STDs, and teen pregnancy.

How Can YOU Live Unlimited?

I hope Linda’s story has demonstrated how living unlimited isn’t always about something as daring as ziplining. Sometimes it is as daring as overcoming your own doubts and those of others to turn something common, like a scoop of coffee grounds, a cup of goat milk, or soap and water into a life saving gift of unlimited proportions!

Any time you reach beyond your limits — whether they have been set by someone around you or yourself — you are achieving a #LiveUnlimited moment. #LiveUnlimited moments come in all sizes, big and small. Yet, what unites them is that we all face limits, and we all have the power to break free of our limits. ~ MDA’s #LiveUnlimited Campaign

I am sending Linda this #LiveUnlimited bracelet to celebrate the ways she demonstrates the #LiveUnlimited principle. She may choose to keep it for herself or pass it along to someone else who needs encouragement, maybe to one of the many girls she has encouraged along the way.

Supporting Muscular Dystrophy

How can you incorporate the #LiveUnlimited idea into your life? If Linda can do it with coffee grounds, I’m guessing you can do it with something right at your fingertips or with some seed of an idea that has been aching to take root and thrive!

Supporting Muscular Dystrophy

Children in Kratie Province Cambodia

The #LiveUnlimited Bracelet and Campaign

If you would like your own  #LiveUnlimited Bracelet, you can purchase it by clicking here. $6 from the sale of each bracelet goes directly to the Muscular Dystrophy Association.

If you would like to participate in the MDA #LiveUnlimited campaign, you can:

  • Created a custom graphic (like my ziplining picture above). For every #LiveUnlimited custom graphic shared, $1 will be donated to MDA. Click here to create yours!
  • Keep up with MDA and the campaign on Twitter at @MDAnews, @EndorphnWarrior, and the hashtag #LiveUnlimited
  • Visit MDA on Facebook by clicking here
  • Follow MDA and the campaign by visiting this Instagram account and using the hashtag #LiveUnlimited
  • Purchase a #LiveUnlimited tshirt by clicking here ($7 from each sale goes to MDA)

I was given a #LiveUnlimited bracelet for myself and one to give away to someone who inspires me. All opinions are my own, especially about the coffee grounds, because coffee rocks. 

thoughtful-thursdays4

One Simple Conversation at a Time: #StopHIVTogether

This post is made possible by support from the Let’s Stop HIV Together campaign. All opinions are my own.

In the late 1980s, I explained how to use a condom to hundreds of men I didn’t know who had called the Florida AIDS Hotline as they tried to figure out what to do about the new challenge threatening their health. I had been volunteering and acting as an on-call supervisor at a local crisis hotline, and it was awarded the contract for the AIDS Hotline. I was not an ally yet; I was just doing a job.

Over on the west coast, Mark S. King was also volunteering for an AIDS-related project. When he chose to volunteer for AIDS Project Los Angeles (APLA) in 1986, he was doing more than “just a job.” Having been diagnosed as HIV positive in 1985, he needed to do something, and coordinating the APLA speaker’s bureau was his outlet. He thought he would be dead soon and craved immediate gratification.

As it turns out, Mark did not die in 1986 (thankfully). Although he lived in “three year increments” for quite some time after his initial diagnosis (hear more about that in this video with his friend, Lynne), he has now been living with HIV for 31 years and the virus is undetectable in his blood stream due to treatment (although the antibodies which result in an HIV+ test result will always be there).

HIV Prevention

Lynne and Mark

When I had an opportunity to interview Mark recently, I learned that many facts about living with HIV have changed. Specifically, the definition of “prevention” is much broader than it was back in the late 80s. For me in 1988, it meant telling strangers “don’t have sex” or “use a condom.” Mark says the most powerful preventative among his community at the time was: funerals.

In 2016, Prevention and Living with HIV Are Different

In addition to condoms, there are now more options for prevention:

  • PrEP (Pre-exposure Prophylaxis) – people at high risk for HIV can now take a medication that lowers their chances of getting infected. Learn more here.
  • PEP (Post-exposure Prophylaxis) – People who have been potentially exposed to HIV can take antiretroviral medicines (ART) after being potentially exposed to prevent becoming infected. Learn more here.

For people who have tested HIV+ but are on treatment, remaining on treatment in order to keep the virus undetectable is an option. Partners who go this route should know that:

  • · Everyone’s “undetectable” status is only as good as their most recent test.
  • · This choice clearly requires a level of trust between partners.

HIV Prevention

Simple Conversations Can Dispel Misinformation

Ironically, having not batted an eyelash throughout Mark’s book, which chronicles his experiences owning a phone sex hotline and frequent cocaine consumption in the 80s, I found myself hesitating to ask what he meant when he said several times, “I am able to have sex safely with my husband because I am on treatment.” Finally, I just admitted I needed to know more about what exactly he meant.

That’s when he clarified that an HIV+ person on successful treatment can’t transmit HIV. This has been the case for five years.

If I hadn’t asked or he hadn’t been willing to share, I would not have known. The solution to clearing up my confusion was a simple conversation.

“At Risk” Can Mean Anyone

To be perfectly honest, I am not sure if a single person I know and interact with here in Tallahassee is HIV positive.

Even though I don’t currently have someone in my circle who is HIV+, my circle has gotten a heck of a lot bigger since I have gotten involved in (some say addicted to!) social media.

Is there someone among my 2500 Facebook Friends, 9500 Twitter Followers, 3000 Instagram Followers, or 225 Snapchat Friends for whom I can make a difference?
I can’t be sure, but I know that doing nothing is not an option when:

  • Youth aged 13 to 24 accounted for more than 1 in 5 new HIV diagnoses in 2014.
  • Young gay and bisexual males accounted for 8 in 10 HIV diagnoses among youth in 2014.
  • At the end of 2012, 44% of youth ages 18 to 24 years living with HIV did not know they had HIV.
  • My peers are re-entering the dating world as decades-old marriages end and/or discovering that their partners were not monogamous and may have put them at risk.

Will someone identified in one of the above bullet points see something I post and feel less alone, more fortified to proceed with testing, more confident in engaging in a simple conversation?

Even if the people in the populations mentioned above don’t see one of my posts, maybe you will (and I know you’ve read this far, so you are equipped to help!). Stigma is eliminated one chat at a time, and I am asking you to help make a difference.

HIV Prevention

A Year Can Change Everything

I love the fact that this post is going live on June 26. Last year at this time, rainbows proliferated as same sex marriage was legitimized. However, the year has brought with it the flip side of the coin: those who spread hate.

I was so very excited to speak to Mark. We both sort of threw out the pre-written interview questions and just …. talked. The only moment of silence was when our conversation wandered to the tragedy that occurred at the Pulse Nightclub in Orlando. Mark told me how he, at 55, an award-winning activist in a happy marriage having overcome so many hurdles, was shaken to the core, immediately transported back to feeling like an unsafe sissy at risk of daily beatings. I stumbled for words, failing to respond adequately but empathizing at the same time.

What does that have to do with HIV?

It has to do with HIV because it’s hard enough for some people to come to terms with their own sexuality, much less the strategies they have to employ in order to protect themselves and others from HIV infection. Feelings of being unworthy can be the most difficult barriers to self care. As Mark says, the enemy is a virus, not our humanity.

What Can One Person Do?

If you still don’t understand HIV, ask.

You can get the facts.

If you are ready to help, click here for tons of resources.

You can get tested or help someone who needs to get tested figure out how.

You can get involved and share a story.

You can get materials to share.

And to learn more about Mark, visit his site, follow him on Twitter at @myfabdisease, like his Facebook page by clicking here, or buy his book here.

Lastly

My journey to being an ally was, in retrospect, pre-ordained. I am grateful every single day that I was put in that little room talking to all those strangers about condom usage. I heard their fears. I went myself for an HIV test (never mind the fact that the behaviors I thought put me at risk were, um, hardly risky). For the long version of my ally story, Not About Me, click here.

Yes, Mark is HIV+ but the part that came through to me was our commonalities. We laughed about the fact that we both have “old fashioned” AOL accounts. We shared some fun word play as we exchanged messages. We talked about how each of us goes about life trying to live with joy and humor.

I don’t know about you, but I’m all for more joy and humor, and a lot less stigma.

HIV Prevention

Making a Difference: How Soon is Now?

HOW SOON IS NOW?

When I was running recently, the lyrics to one of the songs on my Playlist were “How Soon is Now?”

Since I became a Shot at Life Champion in 2013, and a Champion Leader in late 2014, I have learned a lot about vaccine-preventable diseases and the potentially fatal barriers children face in many countries. I have met incredible people, and seen I have seen government “at work.”

If it were up to me, I would take a plane across the world and personally administer a child in Nigeria, Afghanistan, or Pakistan, the three countries where polio still exists, a life-saving vaccine. I would put together the $20 worth of vaccines that will give lifetime immunity from measles, polio, pneumonia, and diarrhea to the children who are currently dying every 20 seconds from those diseases and just do it.

The problem: simply vaccinating children is not simple.

Simply vaccinating children takes the intricately coordinated efforts of people in the affected countries, manufacturers who make the vaccines, vehicles who transport the vaccines, copious amounts of funding, and an alphabet soup of accounts and programs including UNICEF, GAVI, CDC, and USAID. “Simply” vaccinating children a world away takes the involvement of us here in the United States. Although there are many reasons, three of the main ones are:

  • the existence of these diseases anywhere is a threat to children everywhere (as we have seen with recent US-based measles outbreaks)
  • prevention is infinitely more cost effective than treatment
  • it is the right thing to do.

As a Champion and Champion Leader, I have had many great experiences in two short years:

Two Shot at Life Summits in Washington DC

Making a Difference: How Soon is Now?

With fellow champions Nicolette Springer and Sili Recio in March 2014

Meetings in the Washington, DC, offices of my Senators and Representatives

Meetings in the Tallahasssee, FL offices of my Senators and Representatives

In-Depth training on vaccine-preventable diseases, advocacy methods, and communication strategy

Meeting Jo Frost of Supernanny fame

Making a Difference: How Soon is Now?

Meeting other Shot at Life Champions who are hands down among the most committed, intelligent, creative, funny people on the planet

Making a Difference: How Soon is Now?

Publication of two Op-Eds, including this one, and a Letter to the Editor in the Tallahassee Democrat

An appearance on WTXL to discuss World Immunization Week 2014 (tune in again on Monday, April 27, between 6 am and 7 am for this year’s appearance!)

In the midst of all these opportunities, I can grow frustrated though. It is easy for doubt to seep in:

  • How will this lovely hotel luncheon/fancy hors d’ouerves event/[insert very first-world goodie or experience here] make a difference?
  • How will that e-mail, letter, phone call, or tweet I sent to my legislator matter?
  • How can I, “just a mom,” do anything for that child in Pakistan?

I recently read A Simple Idea With Huge Potential by Mark Miller, and his post helped me channel those worries in a different, more productive way. Mark described a plan to accelerate his team’s performance by “assigning a champion to each large body of work.” Among the attributes expected of his “champions” was this:

Ensure the work gets done. 

I may not be able to travel to Pakistan to vaccinate a child personally, but I can develop the expertise to make sure our government supports the President’s budget fully so that funding and support for critical global health and global vaccine programs is sustained.

I can inform, advocate, and fundraise for the cause of global vaccination.

I can recruit fellow committed, intelligent, creative, funny people to join me. Heck, you don’t even have to be funny!

We are holding a Champion Training this Wednesday night, April 29, from 8-9:30 p.m.. Please join us, even if you aren’t sure you want to commit to being a champion. It will be a fantastic opportunity to learn more! Click this link to sign up and get on the distribution list for the April 29 call.

I may not be able to completely fix the problem now, but I can commit to being a champion for ensuring the work gets done.

WHO WANTS TO JOIN ME?

Making a Difference: How Soon is Now?

Shot@Life–UN Foundation, Mozambique, Wednesday, June 1, 2011 (Photo/Stuart Ramson)

I am joining my fellow Shot at Life Champions in Advocate 2 Vaccinate, a coast-to-coast challenge for global vaccination that coincides with World Immunization Week (April 24-30). I am pleased to be joining several of them in a blog relay. Here’s the lineup:

Friday, April 24: Jennifer DeFranco with Let the Relay Begin…S@L, A2V, and Me! 

Friday, April 24: Nicole Morgan with Want to be a Super Hero?

Saturday, April 25: Nicolette Springer with Advocate to Vaccinate: You Can Be a Champion! 

April 26 – Pam Brown Margolis with It’s World Immunization Week! Let’s Keep My Little Readers Healthy #vaccineswork #WIW15 and ME!

April 27 – Cindy Levin with Many Actions Save Many Lives

April 29 – Ilina Ewen with Advocate2Vaccinate During World Immunization Week

April 30 – Andrea Bates with Advocate2Vaccinate: World Immunization Week

Felisa Hilbert also wrote about her champion experience in The Power of One.

Making a Difference: How Soon is Now?