National HIV Long Term Survivor's Awareness Day

I was diagnosed in 2003. I was unaware of the countless others diagnosed prior to me, those that didn’t have the chance to fight to be here today. My heart mourns them even when I celebrate the victories of U=U, HIV Criminalization laws being overturned or new treatments that prolong life are developed. I fight on with their lives as my platform so that their living won’t be in vain. This blog entry is dedicated to all of us still here, still fighting, still surviving, surviving still. (I love you Jesús).

June 5, 2019

Dear Champion,

Dear Bad-Ass,

Dear Hellraiser,

Dear Advocate,

Dear Survivor…

DEAR YOU,

However you describe and define yourself, you are here.

You have overcome a life-transitioning diagnosis. You have faced stigma and stared it down to the nothingness that it’s supposed to be. You have championed the times of medical adherence challenges. You survived Reagan and AZT. You will survive Trump and the elections of 2020. You have kept your eyes open in spite of the blinders society wears to very existence you behold. You have risen above, stood on top, pushed through and carried on.

And even for those moments or days where you didn’t show up as your best or felt that you couldn’t. You did.

The day you received your diagnosis. The first time you confided your status to a loved one. And the second time, and the third and so on. The day you started your treatment and didn’t know how you were going to make it like this for the rest of your life. The day you woke up and taking your meds was a little less bothersome. The day you reached undetectable. The day you realized you are more than your diagnosis. The day you accepted that your dreams were not infected. The day you looked at your reflection and didn’t cry.

There are shoulders of greatness that you stand upon; there are shadows of stigma you’ve emerged from. There are avenues of innovation and boulevards of dreams. There is a journey to be traveled and you my beloved friend are here to pave the way.

Your history is embedded in hope. Your legacy is empowered by living your truths. Your victories are anchored by simply showing up and living day by day. Your viral load doesn’t define you. This diagnosis doesn’t delay you. But this day, dear long term survivor - celebrates you. Thank you for being here. Thank you for not just surviving, but thriving.

Sincerely,

IMAGE: Woman smiling with words in a frame around her face Long Term Treatment Works, Kamaria Laffrey 16 Year Survivor, HIV Survivor

Graphic Design Credit - Zee Strong of the Digital Living Quilt

Positively Fearless

“Life isn’t meant to be perfect. It’s meant to be lived.”

In the early summer, I had the opportunity to lend my voice as a spokesperson to a campaign that has changed my life, recentered me in my “Why…” and been something I’ve been incredibly humbled by but so proud of.

The Positively Fearless social media campaign, sponsored by the Janssen Pharmaceuticals of Johnson & Johnson is a patient advocacy campaign focused on promoting what redefining what it means to live with HIV and looking towards the future with purpose and promise. So much is possible when you’re living Positively Fearless and I had the opportunity to uniquely define what that means to me, along with fellow advocates Jahlove Serrano, Daniel Garza, Guy Anthony, and Robert Breining. Together, the five of us speak not just about our diagnosis, but overcoming challenges and mindsets to live free from stigma, take control of our treatment, practice self-care and putting ourselves first to live our best lives.

I said earlier that this campaign has recentered me and it’s a process so I won’t go into all of it here, but I will share that the timely reminder that I can take charge of my health, keep my viral load suppressed and navigate challenges in the whirlwind of the advocacy work that is piled up on my plate — was a helpful and sanity-saving reminder. So much so, that before the campaign’s video series even launched, I had gone to the website www.positivelyfearless.com and downloaded their self-care materials to use for a workshop on self-care with PositivelyU. I don’t believe in coincidences, and the opportunity to work with the clients, better known as STARS of PositivelyU on empowering them to have the difficult conversations with providers, prioritizing time for self or simply being in tune to their environment was a dual-learning experience I will forever be grateful for.

Take a moment to visit the website and check out the materials, swipe through the Instagram account and be a part of the conversation. Declare “I am Fearless” and share how — whether you are living with HIV or not.

Remember... “Life isn’t meant to be perfect, it’s meant to be lived.”

How are YOU living Positively Fearless?

Have a powerful and productively blessed day,

15 Years Old

I made this post on Facebook in a moment of amusement, but have not been able to stop thinking about it since. Today marks the day my whole world changed.

I was diagnosed on August 6, 2003.

Realizing this has been fifteen years almost makes me feel like this is a new diagnosis. I have also just started my menstrual cycle, so it could just be hormones mixing with reality.

Part of me feels like I should be celebrating. Another part of me feels absolutely depressed because I have lost too many mentors and friends in just those fifteen years. Yet, another part of me reflects on all the amazing people I’ve gained in my life and how empty it would be if I had never met them. Then, in the next moment, I remember I have to take my treatment and this spiral pulls me to The Upside Down all over again. The stigma, the loss, the health challenges, the fights for justice, the energy exerted to be whole, the energy just to smile through another day.

An HIV diagnosis robs so much from you - but dammit, it gives you so much more. Like, you can Google me (maiden name and married name) and I’m like doing stuff. I am building a legacy in spite of my diagnosis. I am living life out loud to show people how amazing HIV can look. I am embracing my healing so others can be whole, I am giving inspiration so others can see hope and I am living victoriously so others will know how they can still find themselves beyond their diagnosis.

I hold on to the beautiful things, but I have to be honest. In this moment that I hit send and go on with my day, the frayed edges of my red ribbon...make me sad. I just want to be the last one. No more diagnosis. No more stigma. No more.

My 1st business card, made by my dad. #TheFaceToEraseStigma 2009

Healthline's 2018 #HIVHonors...Me?

To believe or not to believe your own press, that is the question.

My grandmother always told me to never believe what people say about me, whether good or bad unless it was going to make me a better person. She taught her children and grandchildren to remain humble. It is why I had to teach myself to just say "Thank you" when being paid a compliment, and to throw off those imposing their unwarranted opinion on me. 

So when I'm recognized for doing  good job, inside I'm appreciative and super relieved that I'm doing something right. Outside, I begin to stutter and justify why I haven't been perfect. I'm working on maintaining a balance of just owning who I am. Perhaps that's why texts like these come into my life unexpectedly!

A swipe or two later and it was confirmed! Healthline commemorates World AIDS Day by honoring and recognizing various advocates, organizations, and initiatives from the entire year that have inspired, influenced and informed through their innovative and tireless work. Looking through the list and seeing so many colleagues and friends, I was shocked. I was named at an #HIVHonor for Best Advocat for Female HIV Health.

To be on a list with anything U equals U related, is an honor. Being recognized the same year that the CDC publicly agreed that anyone liivng with HIV who has an undetectable load cannot transmit the virus. Which of course made the Person of the Year, Bruce Richman. In case you don't know, he is the energizer bunny behind the monumental CDC agreement as well as his initiative with the Prevention Access Campaign that has fueled and empowered thousands of People Living with HIV around the world.

There are many others on the list, including @RiseUpToHIV creator, Kevin Maloney! And the gorgeous Maria Mejia, Dr. Carrie Foote...a really inspiring list! Please visit their website to see the other honors!

Thank you again Healthline #HIVHonors, and Josh Robbins for letting me commemorate my World AIDS Day not just shedding tears for those lost but to know that the work they've inspired me to do is not in vain. 

@imstilljosh thank you again!

Help During Hurricane Harvey

By now, the world is paying attention (or might be tuning out) to the catastrophic events that have taken place in the wake of Hurricane Harvey. The flooding, the crisis and overall panic of the cities of Houston (appr. 2.4 million), Corpus Christi (appr. 326K), as well as surrounding areas has left many people displaced, discouraged and disconnected from their health resources that help keep them alive. 

Before I address the amazing health advocates on the ground in and outside of Texas mobilizing to provide emergency resources and extended rebuilding supplies, I want discuss something that people seem to be griping about on social media. As a native Floridian, I've lived through sev-er-al hurricanes, freakish lightening storms and tornadoes, so this is coming from that perspective. 

I have seen variations of this "concern":
Why didn't the mayors of those towns evacuate those poor people? 

Ma'am/Sir...have you been stuck in traffic on any interstate before on a regular day? All appr. 2.4 million residents aren't ever on the highway at the same time and traffic is still hectic, first of all. Now, imagine ALL the residents trying to leave...but add in rising waters on the interstate (where fatalities would have been higher), subtract those that don't have their own transportation and are in their homes as the water rises, and if you DO happen to evacuate but have pets, I hope you're staying in a hotel (which requires some sort of funds because not all hotels were shelters). Most emergency shelters don't allow pets because of allergies and capacity, so where are you going to put your dog and cat? In weather like this, you cannot predict what will happen, what will go wrong or how long it will last - even in well, prepared states like Florida, there is always something unforseen that happens. And eventhough the actual hurricane is over, the rain hasn't stopped in all areas. The water may have receded in some places, but there are many neighborhoods and communities that are never going to be the same because of water damage. 

The other concern has been where to send money, resources and/or how to get items directly to people that need help. Well, I have great news! There are several health advocates that have orcehstrated health supply drives and created a Facebook group tp house all the information that will help.  This group, named "Hurricane Harvey 2017 - People Who Need Medical Supplies/Devices serves as a non-emergency service that is taking donations & mobilizing volunteers to fill untapped needs for patients with chronic conditions who may need things like ostomy supplies, salt packets, Sharp's biohazard boxes, ziplock for meds, benadryl, etc. etc. etc. This is not an emergency service. They will be collecting items for a while as people continue to battle through the process of rebuilding their homes, pharmacies and schools. There is an Amazon List set up that will be constantly changing. Volunteers are ready to receive packaged items as well and there are other groups for rescue and recovery linked within the posts on the Facebook page. If you need emergency medical assistance please reach out to those groups who have a direct line to emergency services. 

I find this method to be a perfect solution to those that are uncomfortable with texting to non-profits, but I also challenge you to look into your communities civic groups. Most long-established groups have international or national boards that are charged to respond to natural disasters like this. For example, Kiwanis have several of their clubs gathering supplies and responding. Most states have local affiliated clubs that you can contribute to.  Rotary clubs around the nation are partnering with ShelterBox to provide hundreds of light privacy tents to families that are displaced temporarily. Lastly, one of my favorite organizations, Habitat for Humanity is mobilizing in many other states to provide resources and assistance in the rebuilding of communities throughout the impacted areas of Texas. As things slow down work-wise for me around the holidays, I plan to reach out to one of these organizations or partners and find something I can do that's hands on to help elevate the spirits of those that need it.

I know from my experience in 2004 with Hurricane Charley, plus the three others that hit my community in one summer, back-to-back. We lost power for a week. My daughter was one, I lived with my elderly grandmother and disabled veteran mom. It was hot, scary and frustrating but we were blessed. We lived on high land and didn't experience much flooding but with gas stations running out of fuel, people couldn't run back-up generators, food spoiled and the list of difficulties went on and on. It's not something I ever want to go through again and don't want anyone to experience either. I believe we live through things to be the help others are looking for. I'm ready to roll up my sleeves. Are you?

5 Immediate Steps I'm Taking After HealtheVoices17

So, I'm finally back from #HealtheVoices17 and after a full day of rest, I am still at a lost for words on how to summarize or describe my experience there. There were tears, inside jokes, tons of laughs, and a lot that I learned that will enhance the impact I have in my social media advocacy.

One thing is for certain in the goal I set for my attendance at HealtheVoices this year. I did not want to be the same person leaving that I was coming in. Coming in, I was stressed from family issues, burned out from advocacy/policy work, and feeling overall depleted so I was running on autopilot. The first day activities with the #PurposefulConnections HIV Summit knocked all of that out the gate as soon as Rhonda Waters of Johnson & Johnson's HPI (Human Performance Institute) had us re-evaluate our values and get to the core of why we do advocacy in the first place. So, walking out of the conference on our last day Sunday, I was definitely felt back to a empowered place of authenticity. I felt more rooted in my passion.

I just want to share with you five things I have immediately implemented or an in the process of adding to my advocacy toolkit.

1. Add a medical disclaimer to your posts or website.  I spoke with Benjamin Di'Costa, a fellow HIV advocate and among many other wise social media tips he gave, I realized this one was such a simple one and I had overlooked it. It protects advocates, while we are patient experts, we are not always medical professionals and are only speaking from our lived and learned experiences. There are a lot of examples throughout the internet that can be tailored to fit the needs of any advocate. I have now placed this disclaimer throughout my website because what I may advise may not always be what I know for each individual person that reads my content. I want us both to benefit from this relationship and for no harm to come to either of us. 

2. Making videos is easier than one thinks. When I attended a session on creating impactful video for advocacy last year, Josh Robbins had amazing tips on scripting, lighting, audio and apps to use that were super inexpensive. Cameras intimidate me eventhough I know that using video is effective, so I didn't fully implement his tips or take them seriously for my work at the time. This year, he gave great tips on the same issues, but hearing it again as well as other attendees experience using what works for them, I have now found that I can afford and accomplish bite size videos that will help me in HIV advocacy. Lilly Stairs even posted in our HealtheVoices Facebook page, this great app in iOS called Clips that does closed captioning so followers that are hearing impaired can access content. It's FREE! It's EASY! It's FUN! I'm starting out with that one and hope it takes me to another level.

3. Legislative advocacy is critical. In a session by Type 1 diabetes health advocate Christel Aprigliano and Public Affairs Council expert member Nick DeSarno, a wealth of information was shared on how to effectively speak with your congress members, their staff and if they refuse to host public forums, there are effective ways to "out" them that will help bring the importance of your cause to light. One thing I think is effective is to attend their campaign events, town forums or party specific fundraisers and ask for a photo opportunity with them. Be sure to wear a shirt that speaks to your cause in a bold statement, then post said photo to social media with whatever policy oriented hashtags or messaging is best suited for the position you want them to consider for your cause. I'd even go the extra mile and send them a copy of the photo as a thank you card. Being reslilent in policy work is the key. Decisions in legislation are not made overnight, building relationships is key - and never, ever give up.

4. Protecting your followers is just as important as protecting yourself. This was probably most impactful for how I view my social media presence. I never have a problem stating how naive I can be and this was one of those times my ignorance was evident. My method of defeating HIV stigma is to put it all out there and dare anyone to say anthing, not taking into account that some things I post may be triggering for others. It is my responsibility to be considerate to that. I'm grateful to Kirsten Schultz and Dr. John Grohol for sharing tips on how to handle that during our Privacy in the Public Eye panel.  For example, if you are posting an image of your lab work experience on Facebook, the appropriate way would look like this:

There are many variations of what words can be put in place of "trigger warning" such as specifically what is mentioned, i.e. "may contain an image of blood", "warning: do not read if needles make you uncomfortable", etc. When you place a specific amount of space in a Facebook post, it automatically hides it from the viewer with a "See More" prompt which I used to find annoying, but now see how it's purpose is incredibly beneficial to protecting my audience. 

5. Not being a 501c3 does not limit my advocacy work. Thanks to Janssen Pharmaceuticals, Inc., the Community Foundation of New Jersey and online patient advocates everywhere - we can now apply for a charitable grant that engages, informs and empowers patients in our community as well as combatting stigma and isolation. The grant sizes will range from $1,000 - $5,000 and will be held to a project completion in September 2018. This was amazing news as I (like many others) are full of ideas, but don't have access to funding and feel limited in my advocacy reach. There are certain restrictions and qualifications with this grant that you can read about here. I am incredibly grateful to the staff of Janssen and The Community Foundation of New Jersey for providing this opportunity to so many amazing advocates that are truly further empowered to change the world. 

This is a short list of things I have learned and put into practice in the past two days after HealtheVoices17. With the network of friends I've established, I know that there will be more and so far I feel more deeply rooted in the work around me, thank you just isn't enough.

Countdown to #HealtheVoices17

It's that time of year again!! I'm so excited and I honestly only get excited for one event of the year as much as this and that energy is reserved for Thanksgiving. I guess you can equate these as the same since I am TRULY thankful for my attendance, participation, and opportunity to experience this.

So, last year I got to have this amazing experience with health bloggers and social media experts from all over the nation. Around 80 of us gathered in downtown Chicago for #HealtheVoices16 and I can tell you it was nothing I expected. You can read about it here.

Now, I'm here to write about #HealtheVoices17 and from an even more cool and different perspective. I have had the honor of working as an advisory panelist AND a presenter to help plan the conference and offer input on what will make this year one to remember in providing skills and resources to health bloggers and social media experts again. I mean, it's no coincidence that someone with a grassroots organization called emPOWERed Legacies, works to help empower patients, #amirite?

So, in case you didn't feel like clicking on the link to my other blog and opening another tab (I have multipletabitis, so I understand), here's the rundown:

What: HealtheVoices - conference designed and built to meaningfully empower and develop leaders in patient advocacy across the nation and various health conditions. This year's theme "Together We Thrive" stems from last year's theme of "Deeply Rooted" where bonds and connections were formed that stretched across health issues, personal experiences and varied diagnoses to unite the participants in a collective experience of empowerment. This year we will show the various and powerful ways that we thrive through all of our health conditions even more so than last year since a LOT of the sessions were planned by and led by the patient advocates (the experienced experts) themselves!

Who: Johnson & Johnson's medical branch, Janssen Pharmeceuticals, Inc. and other organizations (listed below) sponsor this impactful and innovative event

When: April 20th* - April 23rd
*The official conference begins on the 21st, but the day before, small groups of advocates from specific health conditions will meet for a pre-conference summit to kick off their experience. It's going to be a family reunion for the #HIV tribe! I cannot wait! 

Where: Swissotel Hotel in Chicago, IL

Why: In case this isn't emphasized enough, this conference is a gathering of health patients that are experts and advocates in their field of health condition. These conditions range from Inflammatory Bowel Disease, Psoriasis, HIV, Mental Health, Type 1 & 2 Diabetes, to Breast Cancer, Alzheimer's Disease, Rheumatoid Arthritis, Heart Disease, and Multiple Sclerosis (and more). This is an opportunity for the patients of these conditions to gather with other patients that utilize social media to advocate for their community and be a "healthy voice" to inform, motivate, and connect about the ins and outs of their health.

Don't be misled, these advocates aren't just posting and sharing scientific data, which is a strong and useful component to understanding health conditions and how they impact any community, but these are movers and shakers, mothers, daughters, husbands, fathers, athletes, teachers, wonder women and supermen all trying to navigate life and live it to the fullest. They give you a glimpse into their life, what wakes them everyday, what lifts them up to speak out, what carries them through their diagnosis and demonstrate what living really looks like. I want to share these individuals with you, but since I don't have permission just yet, follow #HealthEvoices17 and you will meet them through their social media as they post.

When we gather this weekend, we will be speaking with one another, learning from each other and channeling the collective energy that medical and science professionals need to continue making the advances they have in improving our health. To me, this conference is an exclusive opportunity to put a spot light on the issues that we face as patient advocates. Some of those issue topics are:

• Maintaining privacy while being a go-to person on social media
• Dealing with stigma
• Energy management
• Using data to be effective in social media
• and much, much more!

There will also be moments for fun, connection, networking and relaxation. This year will be the first ever Open Mic night where patient advocates will get to express themselves through their talents as well as group dinners where we will fellowship and break bread and getting to know one another better. It's going to be fun on epic proportions and I cannot wait. 

You'd think as excited as I am I would have started packing by now, right? 

Feeling left out? Have symptoms of FOMO? If you couldn't be a part of the in-person experience of HealtheVoices, fret not because participants will be live streaming the sessions and you can definitely follow the hashtag #HealtheVoices17 through all social media platforms as well as directly from @healthevoices accounts.

Thank you again to Janssen and supporting sponsors Facebook, healthline, WebMD, WEGOHealth, Wisdo, and YouTube for making this experience such an enriching one for all participants. Thank you for setting the bar for health companies to meaninfully value patients for their experiences and give them a platform to magnify their voices. 

Now, time to go pack!

Here We Go Again...Update

I'm trying to not be overwhelmed, frustrated or hard on myself for neglecting my blog. I do not own the monopoly on being busy. I think it's a rites of passage for people to be able to have so much on their plate, they can say that they are too busy. It's not healthy though. So with that being said, I'll give a quick run down on why I abandoned another attempt at a series blog, dust my shoulders off and move on to my current life.

Last blog post, I was on a roll focusing on using prompts to get my thoughts out and was pretty satisfied with the inspiration it generated in spite of the political cess pool I was surrounded in after our 45th President was elected. I was also just starting out at the new Florida Community Organizer for The SERO Project to help modernize HIV specific laws that were being misused to prosecute people living with HIV based on their status and not the actual transmission of the virus. That included a lot of traveling, meetings, conferences, webinars and coffee. During this time, my paternal grandmother passed away suddenly. Actually, my last blog post was a week before her 79th birthday and a month before her passing. I flew out to Arizona to be with family that I hadn't seen in over 20 years. It was heartbreaking, healing and horrible. I might blog about that later, since I did make away with my grandmother's favorite coffee mug! So, through the Thanksgiving and Christmas holiday I was an emotional wreck and come New Year's I was using what little energy I had left to not be depressed. I attended a women's retreat where I was slotted to speak on HIV criminalization; however was the one who walked away feeling that I had embraced and learned new things. I will definitely blog about that soon. My time there is what kept me from going under, pushed me into seeking a professional mental health counselor and brought me to a place of healing and peace. So, I started the year off with a vision board and a word for the year, "SURRENDER". When I tell you about the year I've had so far, you'll get it. It's not about giving up, trust me.

So, there you have it. I abandoned the health writer's challenge not because it was a challenge, but life was just loud and in the way. I might revist those prompts just to say I completed it and I might just move on. There is so much in my life that I am learning about what makes me operate. I feel that I have to stop waisting time with looking back and feeling incomplete. I need to look back to know how to move forward. Just small glances to remind me how far I've come and how much closer I am to fufilling what purpose I have on this planet.

I wouldn't be me if I didn't post something amazing and random!

My amazing is that I am in love with our new family car, Ford Escape. I've always wanted an SUV that wasn't too big and it's changed my life.

My random is that I have a new clothing obsession thanks to my twin friend. I've become a LuLaRoe junkie. I only own one piece to date but I have already found my unicorn piece, just can't find it in my size. This has happened in a span on two weeks max. I fought it as long as I could and then I went to an online album party by the amazing Amy Ball and got my first Amelia. OMG! A dress with pockets, I cannot resist. Cannot. Then I'm attending Twin Friend's party at the end of the month as well as hosting my own with my longtime MySpace friend Mahealani Maes out in CA! I'm sure there will be more spiraling from that!

Ok, so thanks for those that have stuck around and wandered back to my posts squinting through the dust to see I'm still here. I'll be working on rebranding and making this more interactive instead of like a journal. Which reminds me of another reason I haven't been around...this INFJ thing can be heavy ya'll.

*gigles, sips coffee, skips away*

xoxo

www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies

12 Women + 12 Months = PWN Policy Fellows

I think this accurately expresses the excitement, honor and joy I felt when I received an email from Arneta Rogers, (pronounced ARR-nee-tuh) Positive Women's Network - USA Policy & Advocacy Manager. I distinctly remember I was having a pretty fabulous day as Florida HIV Justice Coalition celebrated their HIV modernization bill SB 625 had just passed the Criminal Justice committee with a unanimous vote. I was back in my hotel room with my daughter who was with me on Spring Break and decided to check my email before the end of the day. Disregard the 3,380 unread emails - a lot of them are list serv chain responses.

This cannot be my life. There were 40 amazing, talented and dedicated applicants. Out of them, I was chosen to be among twelve great women that are ready to do the work and take names later.

The process to apply really happened for me at the last minute. PWN kept announcing it and then someoine mentioned in an email non-related to this that they hadn't seen an application come in from me yet. I was stunned and kind of laughed it off. I was scared to make the time committment because SERO is my priority and while I knew that these two opportunities would go hand in hand, I didn't want to stretch myself too thin. Then another PWNer mentioned to me in passing that she thought I should apply. She said, "Don't think about it, just do it." So, that's exactly what I did.

I told myself, if this is meant for me, then it will be. This year whenever I have been nervous or apprehensive about taking a leap of faith, I look up at my vision board to remind myself how confident and inspired I was when I made it. The entire right side of my vision board has phrases like, "Leading woman", "StrongHer", "She's the Boss", "Build Your Dream", "Nothing For Us Without Us", "I am Enough" and images of Michelle Obama, Janelle Monae and I even put a image of myself standing among them because I stand on the shoulders of greatness. Looking at that board told me that I could accomplish something great with this fellowship. I don't know what that is yet, but I know I will be prepared to try.

I hit send on the application and didn't give it another thought.

Until I received an email asking me to prepare for a video interview.

A what, now?

My luck, this would be me...

However, I knew and was comfortable with my interviewers Arneta and Cammie. They asked me questions that made me dig deeper to my WHY I wanted to be a part of the fellowship, what my plans were for my future with the training I'd be given and other questions that helped me own my truth about how little I knew about policy work, but how much I knew this fellowship would not just help me but my community. I plan to bring all the knowledge I gain to others.

After the interview, again I put it out of my head beacuse I didn't want to stress too much about it, but inside I really was on pins and needles to know who was selected.

And then, that beautiful day came when I got the email and I screamed with joy and felt all warm inside. The next question was...who else is going to be in this inaugural team? I'm looking forward to working with the amazing 12, getting to know those that I haven't met before and work with those who's reputation I've admired from afar. I can't believe I'm a PWN Policy Fellow. You can meet the others here.

We are also assigned a coach and by coach, I mean Rock Stars of policy and advocacy work. Suraj Madoori, Kathie M. Hiers, Jessica Terlikowski, and my coach, Kimberly Miller are all people I want to be like when I grow up. With their expertise, committment and resources each participant in this fellowship will be equipped to do just that.

While I was assigned to focus on the Affordable Care Act and Medicaid, everything somehow overlaps and we will be cross-trained in a lot of topics. What are some other issues I want to work on? 

• For my state: 
• the modernization of our outdaed HIV statutes (long-term goal)
• Medicaid & the Affordable Care Act (FL was one of the southern states that did not expand Medicaid)
• For my personal passion:
• Women's reproductive justice, comprehensive sex education in all schools
• Economic equity among women living with HIV

We will spend the next year on webinar trainings every other week, including supplemental trainings in between. We will participate in the PWN Policy Workgroup that meets once a month to discuss local and fedeal policy issues; have reading and writing assignments from the webinar trainings; scheduled conference calls with our coaches and we will have a face to face meeting and training mid-way through in Washington D.C. Oh and the super kicker that I'm excited about is that we get to take the one issue we are passionate about and find an organization through our coach to work with that organization in bringing about effective policy change. Talk about being the hands and feet to the work! Woooo!

Lastly, not only do I get to work with some of the fierecest women in the field, but we get to be coached by influential change makers. I am so honored that they will be investing time in us for a year among their busy schedules. 2017 has me feeling like Beyonce. Seriously.

xoxo

www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies

AIDS Watch - How Did I Get Here? Part 2

So, I've filled you in what AIDS Watch is all about, but in case you forgot, it's the premier gathering of advocates and people living with HIV from all over the nation for a high impact policy traninng on key issues impacting people living with HIV and arming them with resources to have dialogue with their elected congress people on what they should do about it. But then, it's so much more than that! It's what an empowered legacy looks like! It's what never giving up and using the collective power of voice to create change looks like. It's presented by the Elizabeth Taylor AIDS Foundation and AIDS United and this year featured more than 650 people from 34 states, DC and Puerto Rico to continue sharing their truth and enact their power in their communities.

Let me tell you, being around that many amazing, passionate and determined people is something you can get high off of. It's an energy that pulses through you stronger than espresso. It's a sense of community that is as valuable as family. It's a collective heartbeat of solidarity to create change, speak truth, honor life, act up and fight back!

I am still trying to figure out how I got here, even though I've reflected in a brief timeline before, I am still in shock that this is the work I get to put my voice to. Policy work. Woah.

If you had said to me three years ago that I'd be involved as a leader in my community to work on modernizing Florida's HIV Specific laws, I'd look at you in complete shock. 

But here I am. Doing the work, learning the stuff, making the sausage, herding the cats, speaking the language...you get it. And now attending a major policy issue based conference...amazing. As a scholarship recipient, I knew I was going to take full advantage of this opportunity and honor the space I was in even if I couldn't believe I was in it.The guidelines to apply for a scholarship to AIDS Watch were pretty straightforward, the application process simple and the requirements to follow through, fair. 

Day 1 - So, I arrived in DC and immediately met up with a advocate newbie Lindsay, in baggage claim. This girl...I have to tell her story for you to understand why she rocks my world. I met her at the PWN Speak UP Summit last September. She was brand new to everything and had only come across this particular conference because she Googled "Upcoming AIDS Conferences". In the beginning of our session, we went over disclaimers of disclosure. Pictures would be taken to document the event and if you didn't want to be in these pictures, you'd put a green sticker on your name badge. She immediately asked for one. I don't blame her, she had no idea what to expect. Then we kicked into our session with different breakouts led by women living with HIV. We talked about dating and disclosure, we talked about criminalization, we talked about being a voice when you're scared and what leadership looks like for young women living with HIV. We shared, we cried and evidently we inspired. By the time we got to our first break at lunch, Lindsay walked up to me with her green sticker in hand and then walked off to sign the photo release paper. She was done hiding and I was in full on "proud momma" mode. I don't even know if I directly had anything to do with that moment but the fact that she included me has bonded us. So, it was a joy and blessing to start off this conference with her (which she later jokingly handed me another photo release sticker, it's our thing now)

Next, my co-worker and brilliant friend Tami Haught came through baggage claim excited to embrace the cool 45 degree weather that this Arizona born, Floridian resident was not happy about. 

I know that's rain, but there's a theme I'm trying to stick with, Carry on.

We then grab a taxi to our host hotel, only to realize that because our group of 600 (take that Sparta!), we have to wait for our rooms. So, we turned the lobby into one big family reunion! It was the who's who of HIV advocacy and brilliance. Lindsay kept saying she was sitting with the "cool kids". When you realize that ALL of us are the cool kids, where else would you be? I connected with some first timers from Tennessee, re-connected with people I knew by name but not in person, caught up with people that inspire me and make me want to push harder and then our rooms were ready. We were each assigned a roommate as part of our scholarship recipient requirements. When I checked into my hotel room, my roommate hadn't arrived. Lindsay was staying at a hostel so she hung out with me until she had to check in later that night. Tami vanished into thin air so she could crash in her room since she hadn't slept in a few days. 

We then headed to the United States People Living with HIV Caucus reception to kick off our few days together. We recognized some of the AIDS Watch Leadership Award Recipients, and suprised my awesome boss, the creator and mastermind behind The SERO Project and POZ Magazine (and so many other accomplishments), Sean Strub. The USPLHIV Caucus worked behind the scenes to honor Sean with the "Persistent Advocate Award" and recognized him for not just pushing through years and years of hard work but for bringing countless others into the fold as well. We closed the night with Naina Khana, Executive DirectHER of Positive Women's Network and her amazing energy to rally a crowd. When she leads this chant, I literally am ready to break out and run (and I run for no man) to victory!

Lindsay and I then realize we have hit our wall in hunger and are desperate for food beyond the reception's hors d'oeuvres spread. Not wanting to walk too far and just wanting to sit and relax, we head to the Hilton Garden Inn across the street for great service, delicious food (crab cake on point) and relaxing environment. Afterward we go back to my room, Lindsay grabbed her things and got an uber to her hotel and I settled in for the night. 

But then...my roommate came!! A young New York native with an AIDS Service Organization fellowship, she was a doll! We chatted and I brought her up to speed so she knew she didn't miss anything major and the rest is a blur because tired hit me hard and an early day was ahead of me.

Day 2 - This was the day where we would examine the purpose of AIDS Watch which included an overview of our policy briefs on The Affordable Care Act (including Ryan White Programs & Other Health Reforms), Housing, Quality Sexual Health Education, HIV Criminalization and Funding for the Federal Response to the HIV Epidemic. With these issues protected and funded, we truly can reach the goal of an AIDS Free generation. Our morning consisted of various speakers highlighting the importance of this, the poitical landscape we are in now (and have faced in the past), as well as what our Hill visits and state team orientations would look like. Of course, experienced another war cry by Naina Khana, then broke for lunch and meetings with our state delegations.

For me, this is when things got crazy and real at the same time. Because of the size of our group of advocates, the set up required an overflow room with a monitor connected to where the main stage was. Tables were designated with variousd states on them but many people didn't know that until lunch. We ended up with at least ten Floridians, our Hill guide Isaiah Wilson from the National Black Justice Coalition, his co-worker Trinice McNally and our AIDS United Hill guide Matt Lasier. Isaiah was amazing at getting us motivated and prepared to speak with our members of Congress and their staff and he made the experience so much fun. We connected because there are some initiatives NBJC have planned for in Florida and HIV criminalization in the future. After we discussed who was going to work on what topic of policy we then broke out for our hosted meetings and networking sessions.

Well, not before PWN had to shake things up with a group photo, which always include chanting and singing of some form. "ALL WOMEN, ALL RIGHTS!"

We are a force to be reckoned with. Try us. More about that in another blog!

As an employee of The SERO Project, I had the honor to be in the HIV criminalization session and discuss the sucess and challenges Florida was experiencing as well as any advice to new advocates wanting to tackle HIV criminal law modernization in their state. Our room was packed with people crowding the door, sitting on the floor and taking everything in. Other advocates spoke on their experiences as well from Pennsylvania, Ohio, Indiana and South Carolina. 

 

From there since the schedule was packed with so much information and I was beginning to feel overstimulated, I chose to step away from our sessions, review the packets we had been given and focus on some self-care so I could be present the next day. I have to say, it's taken some years of me crashing and burning to realize how important it is to do this. If it's printed on an agenda for me to do, I don't normally take it as a suggestion, but look at it as a requirement, ultimately stressing myself out. I mean, who wants to miss sessions on the Souther HIV/AIDS Strategy Initiative when you're from the South (that session overlapped with mine), or Black Advocacy Networking when you're a person of color? OR how to build an AIDS Watch at home when your state is currently working with legislators to modernize your laws? There was something there for everyone, but no way to do it all. AIDS United has been intentioinal to re-create as much as possible on their website to direct those that couldn't attend to the resources provided at each session. So, winner, winner; chicken dinner!

The day was then closed out by a cluster of events including The Positive Leadership Award Reception where Bre Campbell, Daniel Driffin, Dr. Carrie Foote, Sen. Christopher Coons, Rep. Bill Pascrell Jr., and Rep. Ileana Ros-Lehtinen were honored by the Elizabeth Taylor AIDS Foundation and AIDS United. There was also a viewing of MTV's SHUGA Down South with a panel of the actors and film team fostering dicussion. Lastly, an impromptu gathering/reception for the Prevention Access Campaign's U=U messaging that embraces that "the scientific evidence is clear. Someone who's HIV is undetectable does not pose an infection risk to their sexual partners." It was so wonderfu to gather and celebrate one another in a space of excellent acheivement.

But then hunger ensued and I found Lindsay once again about to chew her arm off. So we tagged along with a crew of hungry advocating misfits to Firefly and had a spread of chicken mole tacos, fried bbq clams, and burgers.

This is the part of the night I call, eat, laugh, crash repeat. Another early and long day was ahead.

Day 3 - Here's my immediate reaction to my experience captured by The Positive Women's Network and highlighted on AIDS United's blog. Woah. 

A First Time Peek from the Hill at AIDS Watch 2017

Just to highlight some surrounding information:

• We had a morning group photo and rally, until the rain came. Unlike some outreach events I have worked in the past, the rain means nothing! March on soldier!
• Capitol Hill is literally a hill. I did not realize this until of course I was half way up. Thank God for comfortable shoes.
• In meetings with members of Congress on days like this (these meetings were pre-scheduled), there may be last minute changes and people may hi-jack your thirty minutes to spend 20 minutes talking about their state issues. Rude, but I get it. Get in where you fit in.
• There is a buzzer/clock in some Congress members offices that goes off when they have to go to the floor to vote. Watching this on TV when the tally of who votes Yes or No shows on the screen, I always wondered why the room was empty or had a small group of legislators milling around, how they were determining when someone voted. I now know. They literally run over the House or Senate floor, vote and leave. I witnessed this in my last scheduled meeting with Rep. Darren Soto. His staff was so friendly and funny while I waited.

This experience could not have been made possible and fabulous without the following agencies and organizations. 

AIDS Foundation of Chicago | AIDS Resource Center of Wisconsin | AIDS United | amFAR | Bristol-Myers Squibb | The Elizabeth Taylor AIDS Foundation | Gay Men's Health Crisis (GHMC) | Human Rights Campaign Foundation | Janssen/Johnson & Johnson | Legacy Community Health | Merck | NAPO Pharmaceuticals | National Alliance of State & Territorial AIDS Directors (NASTAD) | National Black Justice Coalition | National Minority AIDS Coalition | NC AIDS Action Network | Planned Parenthood | Treatment Expansion Access Project  | US PLHIV Caucus


And lastly, but definitely not least. For those of you wondering why in the world I have a Mean Girls theme throughout the images in this blog post...

The Elizabeth Taylor AIDS Foundation has a team of ambassadors all committed to the mission of providing grants to domestic and international organizations that service efforts for treating people living with HIV and AIDS. While they support marginalized communities, they are also breaking ground with support to innovative HIV education and advocacy programs including efforts on HIV criminalization.

I tell you this because as I sat in the overflow room of Day 1 listening to various presenters acknowledge the work that has been done and the work still ahead of us, a team of ambassadors was recognized in the room. This time includes Elizabeth Taylor's grandchildren and great-grandchildren (who I greatly look forward to meeting in person one day) as well as Chandi Moore (xoxo), "Trans-Diva" and bestie to Caitlyn Jenner on I am Cait and Daniel Franzese, best known for his amazing smile and giving fans of Mean Girls one-liners to live by.

While we walked the Hill to meet legislators, we stuck to our schedule not knowing if other advocates from other topics or states would tag along with us. So imagine my joy and suprise when I walked into the office of Rep. Debbie Wasserman Schultz's and see Daniel chilling in the lobby. The. Nicest. Guy. Ever. I asked him how his comedy show went the night before as one of the advocates I had dinner with was invited to go but didn't know if she could make it because it was late. I then confessed to him that it was 13 year old daughter that convinced me to watc Mean Girls and it was one of her favorite movies (mind you, she was 1 when it debuted). He then handed me a "House of Glen Coco" sticker which made my insides happy, but I kept it professional. Ok I fangirled a little, and then lovely Lindsay (not Lohan) took this pic of us:

I did later on get caught up in my nervousness of being around him as an ambassador and Rep. Wasserman Schultz's staffer (who is awesome and super attentive) because we were going to tag team the discussion of HIV Criminalization. When I mentioned it to her staffer Kaitlyn, she told me that they had just signed on as co-sponsors to the federal bill that Rep. Ileana Ros-Lehtinen & Rep. Barbara Lee introduced on March 26th called the REPEAL HIV Discrimination Act (H.R 1739). 

REPEAL HIV Discrimination Act (Repeal Exisisting Policies that Encourage and Allow Legal HIV Discrimination): This bill is no cost legislation that would ask the Attorney General, Secretary of Health & Human Services, and the Secretary of Defense to work with state stakeholders to review laws, policies, and cases that impose criminal liability on people living with HIV; develop a set of best practices for the treatment of HIV in criminal and civil committment cases; issue guidance to states based on those best practices and finally monitor whether/how states change policies consistent with that guidance. 

When Kaitlyn told me Rep. Wasserman Schultz was already on board, I gushed "That makes my job easy (as I handed her my card), thank you very much" and then yielded the floor to the next topic for the next advocate. Daniel and I high-fived and then it dawned on me that he might of have more to say in that moment as he is the ambassador for not only the Elizabeth Taylor AIDS Foundation but for Lambda Legal too! I later saw him having a brief moment with Kaitlyn and felt relieved that he seized the opportunity, but continued to kick myself for being so nervous I overlooked him. I'm sure he didn't give it a second thought, at least I hope he didn't. It was just so awesome to stand there with him representing the same issue. 

So, that sums it up as one of my favorite HIV advocacy moments ever - AIDS Watch 2017. I look forward to attending next year and seeing what progess has been made, especially in the days of resistance.

Have you ever attended AIDS Watch? Did you even make it to the end of this blog? It is one of my longest posts ever (I apologize). If you made it this far, which celebrity would you love to change the world with? Could you maintain professionalism or would you fan-out the entire time?

xoxo

www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies