The Dilemma: Ethics, AIDS and the Medical Community...

For as good of a country America is, we have some dark patches that are obvious. Slavery is high on the list; But then the disenfranchisement of the freed person in the South that followed from 1876 to 1963 made us liars. I mean it was the United States Supreme Court that declared separate but equal in 1896, after the country fought a war with slavery at the center.

 So I'm not confused when Black folk come to me with conspiracy theories about AIDS. Well, some of it is ridiculous, like when they say, "There's a cure in Africa that our government is suppressing. Huh? If there was a cure in Africa, why wouldn't the African people use it there, to hell with trying save someone else, when you can save yourself. Right?? Right!!!  But then there are some half truths in some of what people are saying too; Really! At the end of the day, there are real reasons to mistrust the American government and all of its departments. The Tuskegee study is case in point. Read about Tuskegee Here!

Just the other day, I was taking to Bechara Choucair, the Commissioner of the Chicago Department of Public of Health about this very same topic. I shared with him that the African-American community fear is real and he and his team has to be there every step of the way reassuring us that our best interest is in their heart. But then I got tweeted a link this morning by one of my followers and she said in response, "It reminds me of the syphilis fiasco. Thoughts?," What a way to start the day right back at the Tuskegee Study!

 I grabbed a cup of tea and read the article. You can see the Full Story Here. I'm not gonna recant everything but rather explore the issue at hand. In a nut shell, during the early period of the AIDS epidemic the National Institutes of Health (NIH)  enrolled children who were in foster care into AIDS drug studies.

 No, not without permission, but with the foster care agencies compliance. During this period, there were very few AIDS drugs available to treat anyone! The death rate among children in the United States was high. After the death of parents Foster Care of AIDS children was high and they were left to figure out how to care for these children that no one wanted, not even their families in some cases.

Many of these foster agencies thought that drug studies was the best way to give children with AIDS access to some of the most advance treatments around.

So what's the problem if these were legitimate studies? Well, there is always the overall ethic of whether children should be enrolled in toxic drug studies. All HIV medications are extremely toxic, so the larger question is, do we expose this high level of toxicity to such small bodies?

But on the other side of the coin, if we don't enroll children, then we will never know if these medications will work for them. Clearly we have learned that medications not only work differently for children and adults, but even in some cases for men and women.

Take Hydeia Broadbent for example, a baby born with AIDS and abandoned by her drug addicted mother at birth. She is still alive today because her foster mother, who eventually adopted her enrolled her in NIH studies as a toddler. She had some of the best of the best medical care and now at 27 she is still alive and living well with AIDS.

 The flip side, there is always the potential that these medications will not work for that child and death is inevitable. This is however the case for adults. The overall point, I think is that young people will have to endure side-effects that no little body should have to, but NO little body should have AIDS either.

This is a tough one, especially back then when there was very little treatment available. I think today I would say HELL NO! But I would have that luxury, there are a plethora of HIV medications approved for treatment. So there was no clear cut answer back then. It really depends on how you view the right and wrong of it, if the means justify the end.

Now, there is another issue that must be addressed; And while I cannot give a yes or no if children should be enrolled, I do believe the rights of children should be protected and this is where the study in my opinion went wrong. 

Many states understand that children are powerless and for this reason they put in place a way to protect the rights of children in drug studies. So  if the rule is, "To appoint independent advocates for any foster children enrolled in a narrow class of studies that involved greater than minimal risk and lacked the promise of direct benefit,"; And some agencies require the protection regardless of benefits of the study.

If this is the case, why then was this portion of the study violated? Why is it when there is a chance to be above the board, we take the short cut? This is the very thing that makes what could have been a good thing a bad thing and clouds the entire project.

 Another question that must be asked, why didn't the foster agencies insist that NIH meet its obligations in the study? The study shows, "Illinois believe that none of the 200 foster children-AIDS studies got the independent advocates." New York could only identify 142 of the 465 children enrolled.

There will always be the debate of whether children should be enrolled in studies. Some states have drawn the line, Wisconsin for example states,  "Absolutely never allowed, nor would we even consider, any clinical experiments with the children in out foster care system. "While other states believe it was the best route at the time to help the children.

But for the life of me, I cannot see why two of the wealthiest hospitals  in the country treating children, Chicago's Children's Memorial Hospital and Johns Hopkins University in Baltimore didn't comply with the rule.  Furthermore, these studies are funded by the government. Money is typically distributed nationally to the local medical facilities to conduct  the study with oversight from NIH. It seems to me that everyone dropped the ball. It's the dropping of the ball that helps to create distrust for the medical community and the government.

In the Tuskegee Study they just flat out lied about what the men were actually doing; And when a treatment became available, it was deliberately withheld.  My questions are simple, "How do people, who take an oath to do no harm, deliberately do harm and how does our government condone it? Those are ugly questions that no answer will satisfy.

So when we are faced with a headline that say, "Government Tested AIDS Drugs on Foster Kids," And foster care kids are majority black, and  in the back drop of Tuskegee, there is already a belief that AIDS was created to somehow kill people of color,  it reconfirms in the minds of black people what they thought they knew in the beginning;That our health is not valued like white people; And that creates a barrier to getting proper medical treatment early, not just with AIDS, but a whole host of medical conditions.

Yes, some of the lack of care is our privileged medical system,  property and lack of resources but at the core is a mistrust of the medical community and the government. If the government and medical community really want to change this perception, then they must stop cutting corners and follow the freaking rule! There is a saying, liars lie, so if you lie about one thing, how do I know you're not lying about another. How can I trust what you are say to me about my body is true?

Black people have always believed that we have to work twice as hard to prove ourselves no matter where we go. Well, it's time for the medical community and our government institutions to do the very same thing to win our trust. When they do less than their best, they cast shadow over the good that is done and makes it a tad harder to trust the next time around.  Do Better!!!

Moving Toward 2012: Action, Not Avoidance!

Yesterday when I arrived home from running errands, as usual, I took my coat off and reached for the TV remote control and the cable was not working. My tummy sank as I made my way to the bed room. I peeked over the bed and yes all the lights were off on the internet box.

I walked back to the living room and started roaming through my unopened mail on the counter. "You have got to stop this," I mumbled to myself.  My internet and cable are connected to the phone and now they were all gone. I sighed.

 I found the disconnection notice and made that call.  Of course the telephone company has new hours so I only got automization. Yep, there will be no service tonight.

I sighed to myself, "This is not healthy Rae. How can you expect people to do better, if you're not?" I immediately took control of the situation. It wasn't that I didn't have the money to pay the bill this time and even if I didn't, all I had to do was call and get an extension. As I paid ALL my utility bills, I started to think about what I needed to do to change this very thing. It was clear at that moment that this is a systematic problem that I must address. My cell phone was turned off two weeks ago because I had neglected to pay the bill. I have got to STOP this! Just STOP it! In the last six months it has happened more than I would like to admit.

I understand the core of the problem. In the last few years my finances have been tight. Actually, my income dropped to about 30% of what I normally expect in a given year. As a result I started making it one bill at a time, one day at a time. There has been very few months when all of my bills were paid for the month in a given month.

Somewhere along the line I got frustrated and despondent and I started to make the madness worst. Not intentionally, but through  my continued avoidance. I just didn't deal. It went something like this: I only checked my mail box once every week and sometimes every two weeks. "No point in looking," I rationalized, "It's only bills.  Mostly medical bills, but also utilities.

Then when I did get the mail, I would let it pile on the counter unopened. Generally I know when my bills are due, but never when they are in final collection.  If my funds are low, I just do nothing.

 Like two weeks ago when my cell was cut off, I had about $30 more than the phone bill and there was a part of me that just didn't want to let it go. I knew that disconnection was soon and I needed to find out when, but I kept putting it off and putting it off.  To see myself with only $30 was depressing as hell. But then I created a larger problem, now I have to pay the re-connect fee on my next bill.

Avoidance only makes the problem worst. There is no need in digging any deeper, no need. You have to face the issue head on or it will only get worst. It's like a bad sore that never gets attention, eventually it festers, and then it runs.

Action is required even on those things that seem hopeless and overwhelming. There is always a plus to addressing the bad, if at the very least you have a clearer picture of where you stand. Even if it's a BIG issue, you begin to pull down the layers and with each layer gone, the problem will get smaller and smaller.

It's like unpacking a freshly moved in place.  I remember when I moved in my studio  from my three bedroom place two years ago. I had so many boxes I literally had no space to walk. It was overwhelming for me and my dogs. But my poor  Nambi was blind and she started to panic. I knew I had to tackle the problem head-on, if not for me, for her. I stacked everything as high as I could and I unpacked one box at a time, and in time all the boxes were gone.  And yes my little Nambi was able to develop a new routine now that the boxes were gone.

Likewise, if I had simply opened my phone bill I would have known a disconnection was around the corner. But somewhere in my mind I was buying time until I got off the road from World AIDS Day and I would actually have a check in my hand, which made paying this bill an easier task emotionally. When in fact, all I really had to do was call for an extension if that was my ultimate goal.

In the meantime, because of avoidance, all the work that needed to be done last night regarding my bracelet line sat because my avoidance in one area had now affected another area of my life.

 OK, can you see the picture? I've created a greater problem because I'm not addressing the problem at hand. I cannot run a business this way. I work from my home and I need my telephone, both cell and home and my internet. Last night when I hung up the phone from AT and T I had a lot of time to think about what can be done differently, there was no TV, so no Law and Order for me tonight. Just me and fixing the problem at hand. First step was admitting there was a problem; And no it wasn't with AT and T it was with me.

 I accepted that I had made a total mess of this situation and that it needed to be corrected. No need in beating myself up, just move forward and that's just what I did.

I think I've come up with a good plan.  No, my finical situation has not changed just YET, but I've got to live in balance even when the check book balance is low.  First, I have to do a budget. Now I've tried 6 months budgets and they don't work for me. So, I'm going to do a monthly budget until I have mastered that and then continue up the ladder, two, three, four and so on.

Secondly, I will check my mail every day.  Third, within 24 hours all mail will be opened and placed in its proper category. Medical bills, well at this junction there are no funds to pay those so they stay in an  organizer and together.  But my day to day living is a whole other thing. It's around 10:00 A. M. as I write this blog and you have better believe that every piece of mail I have has been opened and categorized and all of December bills are paid. As soon as I finish with the pressing work of RLT Brand, then I will work on my January budget.

Do I feel better this morning, YES? Knowing where you stand in a situation is actually liberating.  There is an ease that I have that I haven't had in months. My continued avoidance held me hostage and made my situation worse than it was.

Taking action is always the better route.  Not taking action does not always solve the initial problem, if I had no money, I couldn't pay any bills that's an undeniable fact, but I understand that action is relative, with relative outcomes. In this case, taking action up-front would have been asking for an extension;Who knows what tomorrow holds. The fact of the matter, you can only do on today what you know for sure.

I don't care what the core issue may be, avoidance will make the issue worst than if you had taken action. It's just that simple! As you move into 2012, Practice Action, Not Avoidance.

Post Script: Please visit the other post in this series

Click Here For Silence Your Worst Critic 

Click Here For:  Reflect Don't Regret

Monday Reflection: Moving Toward 2012: Reflect, Don't Regret!

If I Coul'da, Would'da, Should'da means nothing in the real world! I know you didn't think about it when you were doing, "It," but it's too late for regrets. As we MOVE into 2012, I want you to reflect rather than regret. This is the only life you have and each decision you make helps to build who we are for the better. It's just that we must to be willing to embrace the better.

What am I talking about? Well, some of us get stuck in the "It" and can't see our way out of it. Yes, you are really out of, "It" but the memory of being in, "It" has taken on a new life.  All the pain and unhappiness that, "It" caused takes center stage. And the spirit of, "It" begins to hold you hostage. As you move toward 2012, you must free yourself from the regret  of, "It" and reflect as a way to move toward deliverance from the, "It." This will allow you to move forward and away from, "It," and towards a better you!

Let's just take a moment now and reflect. You really are better off today because you were in the, "It" Think about it this way. For some of us as we were moving in the, "It," we were going in one direction and believed that path was the right  and for some, only direction.

But for some of us, midstream  you started to feel uncomfortable, you started to second guess the, "It" but you  thought you were too far in to change your course. While others, thought the, "It" was exciting as hell, that is, until that hell began to get hot and the heat and only the heat made you see, "It,' for what it really is.

Let me put it this way. I remember that man that made my toes curl.  #TrueStory Good Lawd, he made my toes curl. And the, "It," felt good! But over time, I started to see, "It," for what it was, but my desire to have the curl toes influenced me to accept the bad. I was so deep in, that I only saw one path, that was, my toes curling.

No, those nights I cried my eyes out because he was somewhere getting high off crack-cocaine didn't matter because when, "It,"  returned, good Lawd my toes curled again. But when my toes began to burn, I had to make the hardest decision ever, to take a different path to save my feet.  Over time you see, the fire started to rise from my toes upward and my brokenness was on this path. One day, I got the courage and I stopped the madness!

Well, it does not really matter which course I took in the beginning, what matters today is that now I know that there is a different path that I can take. I've been down that road. Yep! And I  know ALL it has to offer.  The more I  reflect on that journey, the better I  can see. And with clarity, I become a better person. Knowledge is Power that I use daily. 

 I can stay mad, frustrated disappointed, angry, and bitter and let it take on a spirit of its own and that path let me tell you, feeds into brokenness in a different way then the path you were originally on.

So what he lied and lied and lied. So what I trusted, trusted and trusted. If I stay in the regret of either of these, I will never leave this situation and it will hold me hostage for the rest of my life.

What matters today is that I've taken that experience not as a regret, but as a learning tool to do better and be better! I have my deliverance and I gladly take it to live the best life I can!

Post Script: Please visit the other post in this series

Click Here For: Silence Your Worst Critic 

Click Here For: Action Not Avoidance