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.

Tell me... what are we missing...

Newly infected clients.. this week I had three. They are not stupid. They are regular people who got infected with HIV. One seems totally shocked.. This was not what he planned. He is a lawyer. This is not what he thought was going to happen. Two don't seem too upset about it. I get the feeling that they figured it was going to happen.. someday.
All of them understand how HIV is transmitted yet.. they became infected anyway.
Tell me.. why are people not completely afraid of this disease.
HIV is forever. Forever medications, forever infectious. Forever risk of diabetes, heart disease and cancer in addition to the illnesses that are associated with HIV itself. Forever changes to your body that are evident of HIV, that are symbols for HIV infection.
Why is sex so overwhelming that our judgment is no long is present. Where does out common sense go?
I have a young female patient . She is 19. She delivered a baby about three months ago and gave it up for adoption. She came into prenatal care very late to find that she is HIV positive. She took her medications to prevent transmission to the baby.. so far it is negative. She continues to take her meds now. I saw her today and we were talking about her plans. She has no family or real friends. She gets support from a local HIV agency who are very concerned for her but she finds then very rigid and overbearing. I asked her today what she wants to do. This is what she said.. " I want to travel around and play around until I get sick".
This made me so sad. Here is a young woman infected through heterosexual sex. She does not really know when. And now.. what is her life to become. As much as I try to tell her that she can manage this disease and live a very long time.. she just sees illness in her future.
This makes me so sad. She has kind of given up.. although she promised me she would take her medications. She also promised me that she wold come see me every three months for lab work and to let me know how she is doing.
She is a child.. roaming alone with HIV. She is beautiful by the way...
Do I think she will practice safe sex... possibly not.. she has no income, no skill, loves alcohol. A very dangerous combination.

What can we do for her?
What can we do to prevent more hers?
How can we love her but not "lock her in a box"?

Why is it OK for my young gay men to get infected as if it is going to happen anyway.. eventually?

Condoms are free and they are everywhere...
there is needle exchange or ways of cleaning needles to prevent the spread of HIV.
There is no excuse in this country to get infected with HIV.
Help me figure this out.......
what do you think???

at first it is hard and then....

Today, my patient Clyde asked me if I had written on my blog latety. I said no and thenI asked if I could write about him. He said yes and I can even use his name. I have know Clyde for several years. He arrived at the clinic in pretty bad shape, filled with denial and filled with rage. Getting infected with HIV was not part of the plan that he had for himself. He is a good ole boy, a man that was married and in with the "in" crowd in his home town. An EMT or maybe a paramedic.. working his way up in life. He married, way too young, his high school sweetheart.. The marriage lasted a bit but then Clyde discovered another way. The way of "the party" and his life took a turn.. it was really fun initially, sex, drugs, experimentation etc..... Well he made his way to California and ended up getting test for HIV at a Planned Parenthood here. He was going just to support his other friends,, those friends who had been messing around,.. too promiscuous. not him...them. And he did have a rash that needed attention.
He certainly tells his story much better than I and fortunately he does all the time as a message of prevention...
well of as you may have expected he tested positive for HIV. This was so not in the plan.. This sent him reeling even further into the party abyss. more sex without disclosure.
He would show up at the clinic not wanting to be there and angry about being there and not at all ready for help. then he would disappear,, get into more trouble and then return with various medical issues...
All along, even though he was completely frustrating there was always something charming about this man. His southern accent and smile... was sweet even when he was completely not.

One day I remember being in an exam room with Clyde and he was in really bad shape and I figured at this point I had nothing to loose so I laid it on the line. I told him that he was going to die of AIDS if he did not stop this crap. I remember telling him that I cared for him and that it was hurting me to see him like this but that if he was not going to participate in getting well then there was nothing that I could do for him so he may as well stop coming in. I think that is pretty much how the conversation went.
I had impact that day and Clyde thanks me every day.. I think through his whole initial journey no one said that they cared, no one said you will die if you do snap out of it and that when you are ready I will help you.
Something changed. Clyde got well. HE got clean .. he got motivated.. he got healthy.

Now I can tell you that Clyde has managed his HIV, he is managing his heart (the one that beats and the one that feels). AND, he is also a positive speaker in the area. He tells his story to anyone who will listen hoping that he can prevent this virus from infecting another soul. He understands, as I do, that this virus will end only when the transmission stops and not until then.
He has taken his situation and created good from it. He is not afraid to love others, to protect others.
Now he comes in, a robust smiling man that has gotten his life back. H rides a bike, he is in school.. he is beautiful.

He would be the first to tell you that the virus sucks but he is stuck with it and has now chosen to control it rather than it controlling him.. He is one of the reasons I go to work. He will save someones life with his story and his power comes from his words, his heart and his love of self and his love of others. He always thanks me for being in his life.... and I want to thank him for being in mine.
Thank you Clyde. May you live many healthy and happy years with laughter in your life.

And FYI, if you read the previous story about my son, i want ed to let you know that he is well and living the life of a freshman at UC Santa Cruz.

My dear man from Africa

Several weeks ago I told you about my older dear gentleman from Africa. He has multiple medical problems. We have been trying to get him insurance coverage because he needs a hematologist and a nephrologist (blood and kidney). Initially we are able to g et him ADAP (AIDS Drug Assistance Program). This is a state program that ensures that all people with HIV get the antiretroviral medicatons that they need. No matter your financial situation or your immigration status you will get your HIV meds.
When you get ADAP you are eligible for County innsurance (if you do not qualify for medi-cal). So all of our undocumented patient will get the county coverage. If you are here illigally you can get care. Well, my dear man was here on a tourist VISA and because her was "legal" he did not qualify. Becasue of this he has to travel back to his home country for three months and will hopefull get a visa to return. Imagine the care that will be available??????
At the clinic where I work, we have funds to provide care and labs for our clients. But, if a patient like my dear man, needs additional care it is not available.
This is really getting to me. First of all, he will not be able to get appropriate care in his home country. This dear man is very ill and because of insurance and immigration he actually may die from his illness. We have assisted this dear man with getting him enough medications to last for three months t control his HIV. THis is crucial to prevent resistance to his medications. We must also protect his kidneys and won't be able to monitor his labs for the three months that he is gone. I am so afraid for him.
I know that we have lots of feeling about covering non citizens... but this is a human being, a dear sweet man who has been infected by a horrible virus and it seems that as humans it is our responsibility to care for another human being. Bend the rules. Care for this man. In the big scheme of financial spending his needs are minimal.
I will worry for this man every day that he is gone. I will await his return and hope that he survives the madatory hoops that he must jump though. Imagine how his son feels. Imagine if this was your father. The whole situation breaks my heart.
Keep this dear man in your heart. I will let you know when he return. Hopefully he will.

been a long time

Hello everyone,
sorry I have not been here in a while. My son, the day he was supposed to move to college ended up in the emergency room twice. He is a completely healthy 18 year old who developed severe abdominal pain over about a 24 hour period. I took him to one ER here in the South Sacramento Area. The lobby felt like a cold dirty war zone. People yelling, others just hanging out speaking loudly abuot various personal issues. and meanwhile my son was writhing in pain. The walls were a bland color, the chairs were cold, hard and dirty. We waitied about one hour in that room. Then we were taken back and triaged by a nurse who insisted on giving Eli a lecture on over use and abuse of alcohol in teens. Mind you, Eli had not been drinking and all he could think about was pain relief. Finally we are put in an exam room. Then we waited and waited and waited.. I kept peeking my head out of the curtain and when I did everyne would either look down for turn away, No one would look at me or acknowledge me. Finaly a young MD came in and told us how busy he was and how many patients he had seen since the start of his shift. He then looked at Eli, did not touch Eli, ordered some labs and an ultrasound of his upper gut. Did not really discuss annything with me. And he left the room. We then waited and waited for about another 30 minutes before Eli was given pain medication. He was writhing, pulling at his hair and saying that the pain wass killing him.
For those of you that have children, you know there is nothing worse than seeing your child ill and in pain and you are helpless. I am his mom not his health care provider. I was, just like him, at the mercy of the ER and the MD.

Finally, he was given morphine and was able to calm down and relax. Eli had not slept for two days at this point.
We were sent for an ultrasound of the upper abdomen becasue that is were Eli's pain was manifesting. The ultrasound was negative. There were no gallstones.. (let me tell you that it is very unlikely that a thin, 18 year old male would have gallstone in the first place). They also said he did not have a kidney stone.. I am not sure why they looked for that and oh yeah, the urine sample that he gave which you would want to look at if he had a kidney stone was still sitting on the counter of our exam room. No one ever looked at it for blood or any other abnormalities.
Oh yeah, Elis' white blood cell count was elevated..16 thousand. (normal is below 10 thousand). The MD came back and said that the tests were normal and that he wass sending us home. We asked what we were to do when the morphine wore off. He just looked at us and proceeded to leave the room. The nurse came back to go over discharge and I asked if the MD was going to give Eli anthing for the pain. She said she would ask.. She came back about 10 minutes later and said the MD would like to know what drug I would like him to prescribe.. What the hell! Why is he not in here having this discussion and why is he asking me??

Oh yeah, another thing happened.. Some time during our five hour visit there, One of the nurses said to me that the MDs like working there bcause most of the clients are ignorant and they don't ask questions and therefore the MDs dont have to explain anything.. This hospital cares for many of the poor folks in the south Sacramento area, many form foreign countries. Isn't that a nice attitude?

We went home and sure enough the meds wore off and we were right back where we started from. Eli suffering and getting worse.. We called our family MD who ordered and upper GI. This is where you swallow some barium and you get xrayed while it is moving througn your gut. this is a test for ulcers and stomach irritation. While this was happening ELi was getting worse. Wewere now in downtown Sacramento. So off to another ER.. We went to Mercy General. A hospital with a good reputation and in our insurance plan. Gotta go where your insurance has a contract.
We waiting in the ER which was filled with people coughing, moaning and suffering.. and some where there for minor issues but they had no private health care provider so they needed to use the ER for non emergency care. Afterabout two hours in the waiting room we were taken back and triaged by an ER MD. She was so overwhelmed by the day and the hospital was implementing their new electronic medicall record system so everything takes about twice as long. No fault, just the way it is.. I remember that from our own transistion.
This MD was really concenred about this healthy 18 year old male with abdomincal pain. She wanted some tests and to give him pain medication. The policy is you can not give pain medication unless a patient has a bed. We we were in the hall in a chair. No bed.. no pain medication.. Again Eli was getting worse. Now he had a fever 101.2. In order for Eli to get blood drawn I had to take a wheechair and transport him myself to the lab. Then I had to transport him to the xray to see if the barium was still prevelant in his gut because if it was he could not get a CT scan which is what we should have gotten in the first place. Well , too much barium.. the reason the barium swallow was ordered is becasue it is cheaper and it was easier to get his unxurance to apporve that rather than a STAT Ct scan.
Well that really blew everything.
Finally the ER MD requested a surgical eval.. Eli's pain was now generalized belly pain and he was lookinig really sick. The surgeon came down and took a history and felt his belly and did not think he was a surgical patient but he was going to admit him to observe. Thank god we were not being sent out again.
The surgeon was really upset at the events that had taken place up to that point. Me too.
This was friday at 2pm and Eli was admitted to the hospital.

His white blood cell count wass climbing and his belly pain was worsening. He was requiring morphine every two hours. I was getting very frustrated. Eli was sgetting worse and there were still no answers. Admitted and left alone for the night.

The surgeon returned at about 8:30 on Saturday AM. He touched Eli's belly and said he still did not think it was surgical. Drew more blood and said he would be back the next day. The next day?????
As the day progresed Eli was getting sicker, confused, increaseing pain. I was beside myself. My husband was there too and we were both feeling powerless.
I asked the nurse to call the surgeon. I wanted to know why if he thought Eli wass not a surgical case then why did we not get an internist on the case?
The surgeon did not return the pages.. this went on for several hours. Finally I decided that I wantd to get another MD. I felt abandoned by this MD and watching my son getting sicker was no longer an option.
My husband found out the name of the person that could help facilitate the change of MD and she contacted his vice chief if surgery. Once this hapened and I got on the phone to tell the original surgeon that I wanted another MD that I was very unhappy with his care.. he then stated that he would like to contiinue the case and the he would be more available and speak with me directly instead of getting report from the nursing staff. Appearantly the RN was not giving the information in a way that clearly indicated the change of Eli's status.. Whatever the reason, it is too bad that I had to threaten to fire this guy before he would really step up to the plate.
That night, Saturday, he visited several times and still was not convinced that it was surgical. and another xray still showed barium so a CT was still not an option.
Finally Sunday morning when Eli had a temp of 103.8 and aWBC count of 20 thousand the surgeon thougt it was time too do an exploratory laparotomy. Do you think??? Three days of worseing abdominal pain, fevers and and elevated white count.. what more do you need??

The surgeon went in and in the middle of the surgery he came out to tell us that Eli had a ruptured appendices and that it had probably ruptured three days ago.
No apology, no nothing.. He stated that he needed to go back in and complete the surgery, which he did in about two more hours.
ELi came out of the OR with a catheter, a nasogastric tuble and a drain from his belly.

What a way to start your freshman year.

We spent the next fours day in the hospital and now we are home .Eli is recovering.

I know this has nothing to do with HIV but it has to do with our health care system.

A CT scan is expensive.. but look how much money was spent because the CT was not ordered initially. I am sure the we spent many thousands of dollars trying to figure things out because the CT wass not done . Trying to "save" often costs more in the end.. Just like my disscussion in an earilier post about spending on prevention for HIV rather than treating the actual disease itself.
This does not seem very complicated to me but the policy makers don't seem to see things clearly.

This other part of this story that strikes me is that you have to threaten to fire in order to get proper care. Most people are not as "aggressive" as I am. Most people, once they are in the hospital become passive patients and passive family members. If you are passive bad things can happen. I believe that in a situation like this we are the consumer, the costumer.. where is the costumer service. Why do people in the hospital treat the patients like they are a burden..
We as consumers must stand up and demand excellent care. We have a voice and should not be afraid to advocate for yourseslf or your loved ones.
I do not mean to imply that all hospital workes are like this, we had some terrific nurses. But I should not have to tell people that I am a nurse practitioner in order for us to get respect and information.

budget cuts

For those of you living here in California, you may be aware of the current budget crisis. Included in the budget cuts this year was $52 million from HIV prevention. Here is my question; how can it be cheaper to wait for illness rather then prevent it. The expenses of health care come from those that are very ill, those that did not receive the preventative care, those that did not get the cancer screening, those that did not know they had diabetes because they were never tested early. The expenses arrive from the ER, from late stage care.
So, lets just take HIV. What makes more financial sense? Outreach in the communities talking about prevention has in fact actually cut the number of infections, which would cut the cost of treatment.. which is much less expensive, as you can imagine.
What about testing and finding early diagnoses. Don't you think is is cheaper to provide care early instead of ending up in the emergency room, intubated with multiple organisms growing because your immune system is shot from having HIV for so long and you did not even know it.
A month of antiretroviral therapy is about $1300. a month in the ICU can be over $100,000 depending on your physical needs.
So, what makes more sense? Really.
Take breast cancer. If you get mammograms done regularly and find a cancer before it has spread not only it is less of a financial burden but you are more likely to have better outcomes = survival. The same is true with HIV/AIDS. This should be viewed as a chronic disease that does better when found early and managed properly.
Waiting to spend more later does not seem like financial soundness.
Prevention is the key to health both physical and financial.
The rates of infection have not come down. We must face the fact that actually more prevention is needed. More discussion. Please start talking, talk loud.. Speak with your family, your kids, their friends. Prevention is going to have to come from THE PEOPLE because the funds to the prevention organizations have been cut. It is up to us to get the dialogue going. I can tell you this. we are no where near a cure nor do we have a vaccine. Education/discussion is our only hope and that is where you come in.
SCREAM about AIDS.
I dare you!