painful heart

These last few weeks at work have been intense in many ways and have forced me to look at the work I do and to look at the work I want to do.
THere have been moments when I have considered leaving my job. The reasons are too complicated to go into but the results of the process that it created are worth writing about, to me anyway.
I, for the last several weeks have been considering moving on.. but to where. Where can I work where my heart feels filled, where my expertise is utilized?
I have been serving the HIV community since the late 80s, in some capacity. I remember my days on the newly developed SF AIDS foundation hotline when we new very little about this disease. Our information was limited and we spent time just trying to reassure and prevent. Then I lost my best friend, Tim King to AIDS in 1993 and that catapulted me into medicine as I could no longer watch passively. I studies and developed and expertise and a comfort. I made a difference in the lives of those living and dying with and of HIV/AIDS. I know that i made a difference daily and my patient make a difference for me too. I have found the ideal mixture for my career.
So, if I were to eave the setting now.. what would be next.. I have always said that I can't leave HIV until there is a cure and as you know we don't have the cure. We have not even figured out how to slow down the rates of transmission.
My patients are younger and older than they have been. I have several newly infected young gay men under 22 and when I ask why they say that either they really did not think it was going to happen or, they just figured it was going to happen eventually anyway.
Recently I have two new patients that are women close to 50 from Ethiopia. women who are isolated and afraid in this county with a disease they they do not understand.
Both of these women have never had the need for medical care, and probably if they were still in Ethiopia they would not be getting medical care. But here they are and I immediatley move in to "care " for them. To provide them with the best I am sure feels very invasive and overwhelming. One of these ladies was found to have cervical cancer on her first visit with me. She had never had a pelvic exam before. Talk about culture shock..
but at the same time I feel so fortunate to get her into care and so she has the opportunity to be well.
There are so many people that are so wonderful that I get to care for every day that I am not sure how I can leave. Where would I get the gifts I receive daily.
In addition, I have made a commitment to serve these people until the cure...
I feel like this is rambling but its a fair representation of my internal confusion.

I am part of a community, where else would I find that?
I wish you all could know the people that I have the honor of caring for every day. They are young, old, american, african, asian, middle eastern, male, female, straight, gay, right wing, left wing, educated, uneducated, professionals, never employed, incarcerated and free,,,,
how many jobs gives one such an opportunity?

At the end of the day, I am here.. I will do what I can to stay with my folks.
I thank them daily for the gift they are in my life.

So even though I am fortunate to have found a life that makes sense in the world of HIV.. i would be happy to find the cure.. and move forward, but until that time, here I am

sorry if this is not a perfect piece but this is where I am today

Still happening, newly infected.

For the first time I am taking care of newly infected patients that are younger than my son, Eli.
This has caused profound feelings of saddness for me. I wonder how it happened. When I asked one he said that he just assumed he would get it because he is gay. He did not use condons with an older partner that was known HIV positive.
What is this young man missing that would allow him to get this completely preventable disease.
What did he not get growing up that has prevented him from having the abiity to protect himself, to know that he is worth taking care of. His relations with his parents are very volitile and his father is repeatedly throwing him out, most likely related to him being gay.
He has been homeless and he is 19. What must that feel like?
Infections these days are different than in the past.
When HIV arrived we were caught off guard. Many people were infected before we new what was going on, before we had an understanding of the infection and the way it is spread. Now it is about 25 years later. We have a great understanding of the virus, what it does in the body and we have even developed medication to control this to turn it into a chronic illness. We have learned exactly how thie is spread.
In case you are unclear here is how it goes.
HIV lives in blood, blood is found in the red blood that you see, in breast milk, in vaginal fluid and in semen. Any of these fluids need to enter into the blood stream to cause infection. SO, sex, sharing of dirty needles, transfusions, breastfeeding. These are the most common ways of transmission. If a baby is infected it is during birth. The babies positivity only is dependent on mom being positive. Dad does not play a role in transmission to the baby.
In the womb the baby is in a completely safe environment it is during the actual birth that baby comes in contact with mom's blood that baby may become infected. For a mom on treatment with a suppressed viral load the baby's risk is approx 1%.
At my clinic we have about three babies a year and we have not had a positive baby born in over 12 years.
So that being said.. where are we lacking in prevention?
Condoms, condoms, condoms save lives. They are a must. Needle exchange to allow each person to always use a clean needle...
Why is this so difficult? I understand we are sexual beings, I understand we have issues around drug addiction that are complicated. But what are we to do? Really what do you think?

Every new patient understands exactly how they got infected but they did not protect themselves.

Yes, HIV is a chonic disease but it has so many complications from social stigma to heart disease. How can we convey more clearly that having HIV is no party. AND , one is not eligable for disability just becasue they have HIV. I have heard of people becoming infected so that they can get housing assistance and medical care.
That is a statement of our country right now, don't you think?

Give me your ideas..I am in a position to share your thoughts with others that work in this field.
I am committed until the end..
there is no cure in site... the cure is prevention
If there are no new infectiosn then this disease will end when those that are infected pass on.
It is a sad thought but true.

The other side of the coin is the infected people who knowingly spread this virus. What about that?

It has been a while.. I think because I have been feeling overwhelmed. The number of newly diagnosed patients that i have been caring for has been unbelievable. It seems that every week I am seeing at least 2 newly diagnosed patients. The really hard part is that in the last month I have acquired 4 patients that are younger than my son Eli, who is 19. I dreaded the day and now it has arrived.. and the sad part is that they are not shocked or surprised. Primarily young gay boys who for the most part say that they just expected it would happen. When I asked one what he thought of this and how he was feeling, he said "oh, I am fine, thinking I will become and HIV counselor". He is 18. He is already experiencing weight loss, fatigue, rashes.. Needed to start meds that day as his numbers weren't great.

I have another patient that we will call Kiddo. He is 18 years old from South Sacramento. African American. He came in with his new girlfriend so that they could get tested before they became sexually active. He actually had no identifiable risk, NO sex, no Drugs. Mom is HIV negative.

His test at first was inconclusive so I thought that perhaps it was a false positive as we could not find a risk factor.

So because of that I ordered an actual HIV viral load. (this looks at actual viral particles per ml of blood).

To my dismay his viral load was near 400,000. This is quite high. At this time he officially became my patient. During the time from the result and getting him in for his official intake appointment he ended up at Kaiser hospital with Pneumocystis Pneumonia. An opportunistic infection that can kill.

At this time more labs were drawn and it was determined that his CD4 count was ZERO. I had never seen this before. ZERO.. this means that he had to have been infected for quite some time. After many discussions it still was not clear how he was infected. I had also run an additional test which showed he actually had a more virulent strain that we refer to as X4.

This story has many of us providers talking about how this happened. He states that he was sickly as a younger kid.. He travelled to Cuba.. to Vietnam but no risky things that the patient could identify.

Somewhere along this boys life he was exposed to HIV..

He has touched me. He is quite sweet and quite innocent.

I have yet to meet his mom, which makes me crazy too. It appears that he is alone in this but never says a bad word about his mom. I get angry because I think if this was my boy.. I would be right there at appointments to understand and help my son.

It has been about 2 months since I met Kiddo. He calls me frequently to check in. His CD4 has risen to 10 and his viral load has dropped to undetectable. I think he will be fine if he stays on track with his treatment.

I have been crying recently when i leave the room on these young boys... I feel the challenge of keeping them well for a long and productive life. They are young and vital and I stress to them that they are the same kid they were the day before their HIV test and diagnosis. The challange of today....

An update on my lovely family from the Philippines.... the baby is doing really well. Mom and Dad are great and they finally tested their teenage son and he is HIV NEGATIVE.. we were all relieved. This family is an example of unconditional Love and a team that will face all of the challenges of life together. I have great admiration for them and feel honored to be a wittiness to their power.

Update: my lady with insurance problems

Sorry I have not been here in a bit. It seems like life is so filled that I just don't have time to sit and write. I want to give you an update on my patient who did not have enough pharmaceutical coverage. What I ended up doing was changing her HIV regimen to Atripla( a triple drug combination pill) hoping that I could get Gilead Pharmaceuticals to allow her to participate in their patient assistance program. Initially she was denied for makeing over $50,000 year. Now remember this is a single mother of two daughters. One in high school and one in college. She pays all of their expenses, education, insurance for health and auto and everything else that is costs to have children. She workes full time and makes $62,000/year. Now even making that amount of money my patient has no extra funds at the end of the month. She certainly does not have $2000,00 for her HIV medications.
We appealed with the help of my pharmacy manager (He totally rocks). She submitted all of her income and expense history and they agreed to giver her free drug for one year.
I was so thankful but also immediatley wondered what we would do at the end of the year. Would they renew???
Well I thought we would just focus on now..
Several weeks after starting the drug she developed a severe drug reaction and we had to stop the drug. I was so disappointed. I was s hopeful that we could relax for a bit. But no...
So she came in to see me with a rash all over her body and face. We had to stop the Atripla.
So now what do we do????
This person works, contributes to the system by paying all owed taxes without resistance. She wants to do everything right, everything legal.
What she decided to do was cut her hours so that her total yearly income would be less than $50,000 per year.
She will have to cut her income so that she will qualify for ADAP (AIDS DRUG ASSISTANCE PROGRAM). She will now qualify for this and I am so thankful that the state has this program to help my patient and so many of my patients with HIV/AIDS.

The situation really makes me angry. Here is a woman who is high functioning and working within the system as a tax paying member and we offer her no help. We make her decrease her income and become a user of the system in a manner in which she never planned. .
This is why we need Universal Health Coverage. People should not have to make such a compromise for health.

I have great respect for my patient. I wish she felt comfortable to make her story known publically but with anHIV diagnosis it is not really possible for her. Iwould love to take this story to the press.

Please fight for universal coverage. What would happen to you.
If I were to loose my job and Rick and I lost our coverage he would not be elgable for coverage related to his pre-existing diagnosis of diabetes. As many of you know he was in the ICU this year. That cost without insurance would of put us out of our home.. We are so close. We are all so close. Health coverage should not be a stressor in life.. It should be a human right in this great country of ours.
This story should make you just as angry as it make me.

Hope to be back soon.

internal struggle

I am having an internal struggle. The situation in Haiti rarely leaves my mind. As a health care provide my instinct is to go and be of service. Unfortunately I am not a surgeon and my particular skills are not in need at this time. BUT, I am feeling helpless and sad. I look at the images of Haiti and I wonder what must it be like. What must it feel like to watch a bulldozer come along and scrape up the dead bodies of the ones you love? What must that fee like? I can't begin to comprehend how one survives but people do. The strength of human spirit is staggering. The power to focus forward to have faith that it will, somehow, get better is fantastic.

Yesterday at work, people were complaining and I though what the hell are we complaining about. We have food, water, shelter, safety. Why is it so hard for us to remember how good we have it at ay given moment. Why is it hard to remember out own fortune? What is it about us that makes us complain and always want more?
When I look at the survivors of Haiti I am saddened but I am also thankful. To be reminded of the greatness of my life is a gift. The goal is to hold the gift as a conscious thought.

I know that in my life I must do more for humanity. I am searching for my vehicle to do so.
My job allows me to give.. but I want to do more and will search for more to do.

I am not sure how this all ties together today but these are just my thoughts. Earlier today I went to a birthday party for Kavita. She is turning one. She is the daughter of my friend Archana. It is Archanas birthday today. Te children were present and having a great time in a blessing moment. No suffering.. just play. They were surrounded by their protectors, their parents... in a world that is safe.

Juztaposed (I am not really sure how that is spelled) with the situation in Haiti. It is some childs birthday there today.. and the word it not safe. Their protectors may be gone.

Tese two situations co-exist. Both real and both valid. The difficulty for me is to keep them side by side as realities to be acknowledged. It is a strange task.

I am feeling a bit off balance.
I would ive to hear how tohers of you are feeling about all of this. Thanks

What if this were you...

I have a patient who is a single mother of two teenagers. She was infected by her ex-husband probably many years ago but she was diagnosed about a year ago. At the time of her diagnosis she had AIDS based on her CD4 count. Remember I said that one gets an AIDS diagnosis when their CD4 cells are below 200 because at that number they are at risk for developing opportunistic infections. At the time of her first appointment we had to start her on medications for AIDS and also for prevention of opportunistic infections. We choose Prezista, Norvir, Truvada, Bactrim and Azithromycin. The monthly amount for these medications is about $1700.oo. My patient has a PPO as insurance. She is self employed and works as part owner of a resturant. She did quaify for the ADAP (AIDS Drug Assistance Program) inititally, which paid for her medication but now her income has increased just above the line and she no longer qualifies. Now get this, she pays her monthly PPO premiums and it turns out that she only has an annual pharmacy coverage amount of $1000. That is yearly $1000. So as you can see she will not even get one months worth of medications covered.
So I called her insurance company (HealthNet PPO) to ask what I could do to keep this woman alive and they told me there was nothing that they could do.. there was nothing. Now remember she has a preexisting condition which prevents her from going and getting another policy. She makes too much to qualify for medical and she is not disabled so she does not qualify for Medicare.
Remembeer also that she is raising two kids. One is a stuent at San Francisco State University and the other is in high school. She pays their tuition and their auto insurance and her house payment and her daily living expences as well as health insirance, and there is nothing left over. How is she going to get the $17000/month that she needs for the medications that she needs to stay alive?
This has been burning at me since Friday when we found this out. I am so angry. Here is a woman that does the right thing. She works, pays taxes, educates her kids. And now what????
My plan is to try to get the pharmaceutical companies to sponsor her for her HIV medcications. Will they? I am not so sure.
I am sure that there are many people like my patient. Many people that make too much for assistance but can't afford their healthcare. Is this why we need public option? Is this why we must get rid of the pre-existing exclusions?
This woman should not be punished and her kids should not loose their mother.

What do you think of this???
This should piss you off.
This should make you scream.. How do we tell this woman that there is nothing we can do???

let me tell you about...

Yesterday two of my most delightful patients were in the clinic. We were talking about stuff and I asked them if I could write about them on my blog. Well, they said yes. So let me tell you of my experience with them.
I met the first one on his medical intake. He came to the clinic with the following results on his labs work. He had HIV, Hep C, syphilis and perhaps chlamydia as well. He was giggling and appeared strung out during the visit. He looked malnourished and removed. Hiding behind drugs and with friend that were hiding with him. On arrival I was actually a bit stunned at how removed and disconnected he was from the gravity of his situation. I remember speaking with the other MD about how disturbing it was to see someone so fucked up and so young. It broke our hearts and we had no idea what was to become of him.
After many months his life turned around and I was able to learn about him and his story. He tells his story so much better than i ever could but I will give you a taste.
He comes from a conservative home and town in Utah. While in HS he had a girlfriend and she got pregnant. They thought they were doing the rght thing and had their daughter and actually had another one as well. After some time.. and never having finished HS my client split with his girlfriend and left that scene and got into drugs and sex.. hugely into drugs and sex.. as a way to avoid the pain of his life.
He prceeded to get sick in vague ways and was finally tested for HIV and it was positive. This set him into another spriral of more drugs and sex...more self-destruction.
Somehow he was able to find his way out of his darkness and seek help. I cant really tell you the specifics becsaue they don't really matter. What matteres is that he was able to overcome all his "stuff", get clean, find the true meaning of his life. He is reconnected with his daughters. His Hep C is gone. His HIV is completley controlled. He had gone back to school (he is in his 30s).
He had chosen to help others deal with the same pains that he had dealt with. He is a star. He is magic and I am so proud to have wittnessed this transformation.
He has a wonderful partner that has a kind of simular story. A delightful person who felt like he did not fit in. Always tring to get others to like him.. to want him and this led him to behaviors that led to his HIV diagnosis. He too is clean and also helping others. He has a smile and an energy that speeds up my heart ever time I see him.
These two men.. both with pain as teenagers that led they astray. They did nothing wrong. They had pain and were lookinig for comfort.
I think they have found that comfort now and it is a joy to watch them thrive and grow and love.
I thank them for all that they do every day and I thank them for allowing me to be a wittness to their story.
and I told Jonathon I would say his name. Jonathon Berg. So there!
I love you guys. you make my life better and you make my job have deep meaning and you feed my soul.