Brandon's Story

Post date: Aug 16, 2014 3:08:21 AM

My life with HIV & the failed system built for survival 2009-2014

I was born 1983 in Eau Claire, Wisconsin middle child of a family of 5 children. Rose in a Lutheran faith based family,

with a typical Midwest upbringing; until age 5 when my parents got divorced. At the early age of 12 I came out to my family. By

age 13 the use of drugs, alcohol, and sex were introduced into my life. At the age of 14 my parents attempted to send me to

counseling in an effort to “fix the phase” of being gay.

By age 15 I made the choice to go and live with my father as an attempt to escape the restrictions and rules at my

mother’s home. By the time I turned 16 drugs and alcohol became prevalent in and ran my life. Severe depression kicked in. As

did a lack of caring, which was closely followed by reckless and careless sexual activity; accompanied with an ever increasing

use of substances, and a number of failed suicide attempts I was placed in the care of the state and shipped off to a small slew

of group homes; and treatment centers, ultimately placed into a state mental institution, the Winnebago Mental Health Institute;

which was part of the Waupun Correctional Institute and now a ward of the state for a year and half. After a very close call with

death, due to my drug use and a purposeful and desperate cry for help, overdose. 8 hours away from family, and locked up with

cannibals, and some criminally insane people. It was a petrifying experience, one I wouldn’t ever wish on even my worst enemy.

Rehabilitation did little; if any it made the drug and alcohol use, as well as the promiscuity on a fast track towards

further self-destruction. Shortly after release from the institution I was introduced into the world meth. The downward spiral

began, again. Blind to what I was doing to myself, accompanied with a passion for death, a life a loneliness, and an inability to

feel or care about anyone including myself; my reckless behavior soon brought me to using intravenous drugs, and unprotected

sex parties. At times knowingly, and without caring; having unprotected sex, and sharing needles with HIV/Aids patients.

Moving to Minneapolis, MN by age 19; these battles and lack of moralities continued into my early twenties. Growing

into a rampant and out of control drug and sex filled lifestyle; dabbing in the pornography and prostitution rings. Miraculously I

remained HIV negative; throughout my dangerous and wreck less escapades. The contraction of “less severe” STD’s a number

of times; I believed myself to be invisible to the virus. This made me even cockier, in the face of the virus; at times I would even

attempt to hunt it out. I had become what they call in the gay underground a “bug chaser”.

I inadvertently found “the love of my life” 22 at the time, at a meth party. He was the bees knees to me. The most

beautiful man I had ever seen. I was absolutely taken, we even discussed HIV; asking each-others status, he told me he was

negative, but “didn’t know for sure” as was my answer. I went out to get tested to prove my devotion. And yet again, by a miracle

I was HIV negative. I shared my joyful news with my new found lover. He finally invited me out to his house for a celebratory visit.

During my visit, I had used his restroom, he had a shelf full of medication; reading by glance, one bottle specifically

caught my eye. I recognized the name of one of the medications. The one I recognized was from my previous encounters with

HIV positive people prior was called Atripla, and it was a HIV medication. It had my boyfriend’s name on it; I was floored,

unannounced to me I was now in a relationship with a man who had HIV. I had to confront him, which I did, through that I than

learned that he actually had AIDS. Due to my own self destructive behavior, it did not affect me as it would the average person.

Our relationship continued, we grew closer, eventually moving in together. During our relationship I painfully watched as he

began to get more and more ill, quite rapidly.

In watching his struggles with the disease, I had finally come to a pivotal point in my life, and for the first time saw first-

hand the destruction that this virus can have. It became a chance for change; we began practicing safe sex, at his request,

My life with HIV & the failed system built for survival 2009-2014

admittedly with a little resistance from me initially. And being blessed with a current clean bill of health as far as HIV & STD’s are

concerned. I decided to stop being so reckless; and started to clean up my life. Suddenly, my “soul mate” found another, and left

me abruptly upon returning from vacation; and a commitment ceremony in Las Vegas.

Crushed, but confident to start anew; I packed up, 6 months clean and sober, with a willingness to live, a newfound

passion to survive, a drive to make safer sexual decisions. As well as clean bill of health; thank you to free HIV/STD testing by

the Red Door Clinic, in Minneapolis, MN. I abruptly packed it up in August of 2009 and moved across country to Las Vegas, NV.

Drawn by the palm trees, warm weather, plus the glitz, and glamour of the Strip; accompanied with a reminiscence of good times

previously had.

Coming to Sin City with such immature sobriety was a challenge to say the least. Quite honestly, better choices

could’ve been made at times; and the care-less attitudes and behaviors attempted a number of times to rear its ugly face again

in my life. However, after seeing the effect of the disease in my previous relationship I made a conscious effort to always ask my

partners HIV status. Practicing safe sex, with the men who told me they were positive, or unsure. Yet still, engaging in the

occasional unprotected sex with the men who told me they were negative.

In October 2009 I began speaking and flirting with a Sin City local, on an online casual hookup site Adam4Adam. We

spoke over a couple days, talking openly about our HIV/STD status; even the dates of our last test results. We were both

“negative” willing and able to provide papers to prove our status to each other, we a engaged in brief friendship, and a single

sexual encounter. We even used protection, but the condom broke. Being that we were both recently tested negative; we shared

a false sense of security and lack of concern as a result. We went our separate ways shortly thereafter.

By November 2009 I decided that the one night stands just were not emotionally enough for me. With almost a year

clean and sober, now living a healthier lifestyle; eating healthier choices, and exercising regularly. I began searching for a more

substantial relationship. I met a delightful, kind hearted, fitness minded, and health conscious man. We very quickly began dating

seriously, as a commitment to each other and following open and honest talks about our past; we decided it would be a

responsible choice for us to go as a couple and get tested.

December 2009, we went with each other to each of our own respective doctors, as a couple; we were both informed

that the test results would take up to 2 weeks, and if we didn’t hear anything “everything was ok”. Or so they would have us

believe; 2 weeks had passed, than 3; than in the 4th week I received an awkward phone call. January 5th 2009; 2 days before my

birthday, I was gifted with the following conversation:

Doctor’s Nurse: “Mr. Evans, we need you to come into the doctor’s office immediately”

Me: “Ok, when?”

Doctor’s Nurse: “Today sir”

Me: “Ok, why?”

Doctor’s Nurse: “I can’t discuss that over the phone”

Grabbing my roommate on the way out the door, and notifying my boyfriend of the call; I raced to the doctor’s office.

Confused, and worried; we sat in the waiting room for over an hour. Until the nurse came out, and called me back. I was taken

into a little room with an exam table, ugly green walls, a broken stool, and a hand written note about refills taped crookedly on a

white sink/cabinet. I attempted to ask the nurse “what is this all about” to which she simply replied “please have a seat, the doctor

will be in shortly”. 20 minutes later, the doctor walks in.

Doctor: “Mr. Evans, Glad to see you. How are you doing today”

Me: “I’m curious why I’m here?”

Doctor: “Why did you schedule this appointment today?”

Me: “Your office called me and told me to come in, today, now”

Doctor: “Oh, they did? Let me go find out why”

My life with HIV & the failed system built for survival 2009-2014

Shortly thereafter, what felt like another 20 minutes, but what was actually only about 2 minutes, he walks in; a box of

Kleenex in hand. To myself I say “Oh, no; this cannot be good”. He sits the box of Kleenex next to me on the exam table, sits on

the broken stool, opens my file, and pulls out a piece of paper. Its lab results, he hands it to me; it could’ve been written in

Japanese, it was all gibberish to me, so I ask...

Me: “Okay, what is going on”

Doctor: “You have HIV”

I crumbled, broke down into sobbing tears. As the doctor pulls me a Kleenex...

Doctor: “You’ll be ok, it’s not a death sentence anymore, when you collect yourself your free to go”

Speechless, and crushed; with no direction, and in a fit of despair, I blindly exited the building; falling to my knees into

my roommate’s arms just outside the front door. After some further composure, I went home and told my boyfriend of the tragic

news. Certain he would leave me, and giving him a free pass to do so; I was astonished when he just held me, and promised me

he wouldn’t ever leave, a small gleam of happiness came through in my darkest and scariest of days. Later, I would learn that

this was not even the beginning; of what would be called my darkest, and scariest days. Unrealized by me; this was just the

begging, of years of pure terror, and a living hell.

Still crushed and without direction, I was in for yet another surprise. The following day the phone rang again. This time

it was the Southern Nevada Health District. Informing me that a partner with which I had recently engaged in sexual relations

with; has recently tested positive for HIV. Already grief stricken, and in a state of shock; I made the comment “No shit, so did I; I

just tested positive yesterday. To which I was informed that it was my “legal obligation” to sit down and have a meeting with

them, because I was recently diagnosed with HIV. The woman, who came, was very young, but pleasant given the

circumstances. Answering my questions about the disease at first; and making me “feel comfortable” in our conversation.

Until she pulled a manila folder out of her backpack; the “humiliation” began, after an hour of talking, she began asking

me questions off of a list. She asked about every sexual partner I had in the past year, and about my entire drug history, previous

STD’s and demographic information throughout my life. Due to my reckless behavior, it was embarrassing; I was overstruck with

shame and guilt. Her looks of disgust during my open honesty was demeaning and full of ridicule.

Then she pulled another form out from the folder; it was a contract. It was a mandatory registry and notice of state laws

as it pertains to HIV and knowingly exposing a partner; and the charges you could face for not sharing your status. They made

me sign this contract that would remain on file with state of Nevada. The contract stated that as an HIV positive person in the

State of Nevada should I not disclose my status to all partners and potential partners I could face charges for murder. But

“everyone who’s positive is required to sign it”, partially insulted; and very petrified I signed the contract, and ended our meeting,

than asking her to get out my house. She politely obliged.

Now armed with a booklet “HIV Resources Guide” the only “resource” provided to me as a newly diagnosed patient I

began my lonely search for a primary care physician/infectious disease specialist. Doctor, after doctor, specialist, after specialist I

was consistently told “were not accepting new patients” or “my practicing specialty is ___, I don’t see HIV/infectious disease

patients any longer”.

After near a month of searching, I finally found a doctor that specialized in HIV care, and was seeing new patients. I

was elated. I met with my new doctor, she was compassionate, and caring; she ordered a slew of labs, and spent near two hours

explaining the disease to me, answering all my questions a number of times. Than the next blow came...

Doctor: “How do you intend to pay for your medications?”

Me: “What do you mean? I have insurance?”

Doctor: “Well, Brandon, most of these medications are extremely expensive”

Me: “My insurance won’t cover them?”

My life with HIV & the failed system built for survival 2009-2014

Doctor: “Being you’re newly diagnosed, they should, but they will only cover up to 80%, however your insurance has a $1600

annual maximum allowance; and one of these medications is $90 a pill; the others can run even higher”

Me: “Well, how much are we talking?”

Doctor: ”It varies on a case by case basis, but they can run from $100-5000 per month out of pocket”

I was mortified, however, she quickly brought me comfort, and informed me about a local organization Aid For Aids of

Nevada (AFAN) who would be able, and willing to help me with the cost of my medication. Immediately upon leaving, I scheduled

an appointment, with AFAN so I could ensure my ability to commence with my treatment plan.

A couple weeks later, I finally went to my appointment. I met with my case worker Joshua. He explained the program to

me, and how it works; and collected all the required financial and proof of residence information. As if anyone could afford

medication at those out of pocket prices; they asked for everything to prove my inability to pay. 3 months’ pay stubs, bank

statements, previous year’s tax return, a written diagnosis from my doctor, a current set of labs, utility bills, and a copy of my

lease; pretty much my entire life and health on paper. But if it was going to help me stay alive, and not progress to AIDS it was all

ok to me. After we were all said and done, I was informed, that every 6 months I would be required to resubmit this information,

and “recertify”; for the rest of my life, or as long as I need their assistance.

To me, that in itself was a shocking blow, wasn’t it bad enough I had this disease, and I have to get labs done every 3-

6 months, and take medication for the rest of my life; but now I have to relive and discuss my health, and financial situation

continuously with an organization; just to afford the medication required to keep me alive. I never did, nor do I to this date

understand why, its required to “recertify” that I have HIV every 6 months; and provide labs to confirm that I still have a disease

for which there is no cure. Wasn’t my SNHD contract and the initial labs and diagnosis enough? It felt like they were continuously

pouring salt on an open wound. Regardless, if it’s required, as my medication is, than it’s an adaption I will have to deal with as a

part of my new life.

A new phase of life began. I almost immediately following that appointment went to pick up my first ever HIV

medication. Until another unexpected twist, I had a severe allergic reaction to two of the three medications contained in this

innovative 1 a day pill. I called my doctor, to no prevail; unfortunately her office was closed. I called my insurance companies

nurse line, explained my situation, and was directed to go immediately the emergency room. They had told me that my reaction

sounded life threatening.

When I arrived at the emergency room; it quickly became another frightening and mortifying situation. Now I had to tell

someone other than my family, boyfriend, and primary doctor; that I was HIV positive, in a public place. I asked for privacy, it was

occupied I bit the bullet and informed them “I am HIV positive, I’m having an allergic reaction to the medication.” They proceeded

with their questions and had me sit in the waiting room. There I waited for almost an hour, to be taken in the triage area and put

in a chair, in the hallway common area. The treatment I received at Sunrise Hospital, a major area hospital; was traumatic in

The MD admitted to me upon approach: “I don’t know anything about HIV except it’s a virus that affects your white cell

count” I was than informed that he was going try to reach my doctor. As I’m sitting in a chair in the middle of hallway, having a

severe allergic reaction, they give me a shot of Benadryl for the itch from the rash that was rapidly spreading over my entire

body, neck, and head. After an additional hour of waiting the doctor tells me that they still have not reached my doctor; and that

they were going to continue to try. However, they were scared to treat me as “they didn’t know” how an allergic reaction to HIV

medicine should be treated in a HIV positive/immunocompromised person.

4 hours pass, not a sign from the doctor, until near the 5th hour; the doctor tells me “I Google searched HIV” were going

to run a test for PML it’s an HIV related pneumonia. However this is going to hurt, we have to take a blood sample from an artery.

Hesitant and apprehensive I let him run the excruciatingly painful test. The test results took an additional 4 hours, now in the ER

for 9 hours; they have finally reached my primary care doctor. They give me an EpiPen, inform me to discontinue medication and

see my doctor the following day. Unannounced to me, this PML test, the minuscule level of knowledge about HIV by the ER

My life with HIV & the failed system built for survival 2009-2014

doctors, and the 9 hour visit would become every visit to the Emergency Room at every hospital in the Las Vegas, valley; even

when being seen for a simple work related foot injury.

The following day I went to see my primary care doctor. She informs me, that due to my allergic reaction she wanted to

run a genotype and phenotype blood test; so we could find out if I was resistant to any medications, and it would tell us which

medications will work with my virus. She was uncertain if my insurance would pay for the test; because it’s a specialty lab test.

We pre-authorized coverage; it was going to be on the 80/20 and my portion was going to be $1,600.00 I was again crushed, I

was told by my doctor that the test was necessary. Thankfully after a quick call to AFAN, they sent me over to a nonprofit

organization called Golden Rainbow; who gave me a check to get my labs done and completely covered the copay. A truly

lifesaving blessing for once is how I felt.

3 months on a new cocktail of medication; its lab time again. I go to Lab Corp; where I am informed that my insurance

has not covered any of my Labs; and without payment in excess of $1,000 they would not draw my blood. My doctor had the

solution and ordered them STAT. It got my labs drawn, and that is what mattered at that point and time. A sense of temporary

panic came over, accompanied with the fear of how I would get my next set of labs done. My doctor assured me if Lab Corp

gave us issues again, she would again order them STAT, putting my fears and panic at ease.

Another 3 months’ passes, and another huge financial blow; due to cutbacks my job had been terminated. My

insurance was discontinued. Alas, again AFAN had my back. They covered my $400 per month Cobra continuation fees; so I

could continue my HIV care; and remain on medication.

As I have begun to become accustom to by this time, tragedy struck yet again. In order to certify me; they needed

current labs. The doctor didn’t have them; Lab Corp would not release them without payment. To make things even more

complicated my insurance company had not been paying my doctor. Now my doctor refused to see me with over $600 deductible

still owed; and no money to pay it due to my recent loss of job; but Joshua at AFAN pulled through yet again. They told me that I

could go to UMC Wellness Center for labs, and to see a HIVAA certified doctor. They gave me the contact information, of the

clinic’s Ryan White Part A eligibility technician. I left the office with hope.

I immediately went directly to the clinic, to schedule an appointment with the eligibility tech. I was informed that there

was 3-4 week wait, now without the ability to get my medication until I was able to see a doctor, and get my labs done; fear set

in. But I had no other choice but to wait, I was assured that I could be seen by the doctor within 2 weeks of meeting with the

eligibility tech. Fright of the unknown effect this lapse in medication would have, was almost paralyzing.

Three weeks pass, and I arrive to my appointment, armed with my life and health on paper; prepared to meet with the

eligibility tech, and excited to restart my care. Another blow, the eligibility technician’s parent had died; she just taken 3 months of

leave. Irritated, I begged for someone else to help; to which I was told, she is the only one. Running back to AFAN, “their hands

were tied” was all I could get from them. I couldn’t do anything except wait for this lady to return.

Finally, I see the technician, I see the doctor, I get my labs done. Hurray! The nightmare starts again; with a false

sense of blessing in the form of employment. I thought this was going to be a good thing; thinking to myself “AFAN won’t have to

pay out as much that should make them happy”. However, due to the activation of my new insurance, it automatically canceled

my Cobra, and therefore discontinued my coverage for medications, as well as for the Wellness Center. Yet again, I race back to

AFAN; to reapply for Ryan White Part B; and begin the hunt for what will now be my 3rd doctor since I contracted the virus.

It was psychologically traumatizing as every article I had read online and in print had said repeatedly “your doctor will

become like your best friend, they will know you in and out; find one you like and stick with them”. My intention from day 1 doctor

1 was just that; to stick with 1 doctor for the long haul. The system had a different plan which was extremely apparent. For the 2nd

time now since I became positive, I am yet again forced to discontinue my medications. Yet again facing resistance building; as

every doctor tells you 95% adherence is the minimum goal; and discontinuation of medication may create a resistance to a

medication or even an entire class of medication. The fear of the unknown at this point is almost unbearable.

My life with HIV & the failed system built for survival 2009-2014

However, with my new insurance, it allowed me to choose my own doctor. After some searching I found a doctor that

could not only help me with my primary care; but he was also the previous director of the Wellness Center and an HIVAA

certified doctor. I was alighted; he was nice, caring, friendly, honest; and sympathetic to my situation. He even ordered a set of

labs, so I could go armed once I was able to get my medication coverage through AFAN after I was able to meet with them. I had

scheduled my appointment with Joshua, certain he and the team at AFAN would get me through it again; my fears were slightly

A couple weeks pass, and I gather up my life and current health status on paper, again; and go to AFAN to complete

my reapplication for coverage. Relieved that I would finally be able get back on medication; yet again. The relief was quickly

turned into apprehension, at the end of the appointment, and the next big blow comes, my case worker, whom I feel I have built a

pleasant business relationship with, informs me; that they have lost their government contract, and a new company would be

taking over all Ryan White Part B cases, including my own. I was told that Access to Healthcare Networks (AHN), would be

contacting all clients, including myself prior to the next recertification date, and they would be taking over my care from hence

After a few weeks, AFAN sent a formal letter; introducing AHN again, and informing their clients that all

recertification would take place within the next 3 months, and that AHN would be contacting all of AFAN’s clients directly via mail,

and phone to schedule those appointments.

Three months passes, with absolutely no contact from Access to Healthcare, during that time while attempting to get

my medication refilled, I was unpleasantly informed that my prescription coverage was discontinued due to the need for a

eligibility recertification. Yet again, now for the 3rd time; I was forced to discontinue medication, until I could be seen by AHN.

AFAN, now had a sign on their front door; they were closed, completely. So I began the solo hunt, which quickly

presented me with the contact information for Access to Healthcare Networks. I place a call, and am forwarded to a voicemail; for

Jennifer; who was to be my new Ryan White Part B case worker. I leave a detailed message, explaining my current crisis; half

expecting an expedient response, I was not surprised but aggravated when no response came within the first week.

Almost a month passes; numerous messages left; I than attempted to contact their Reno “Corporate” office; a week of

voicemails at that office, and finally the supervisor of my “case worker” calls me with an appointment for application. I finally meet

with Jennifer and AHN, my life and health on paper in hand; and yet again finally get coverage. I am informed that I would be

sent a letter, and given a phone call in 3 months for recertification. Furthermore, they told me that thereafter I would have to

recertify every 6 months; but due to my enrollment date, and how Jennifer’s schedule works, this time was “going to be shorter”.

A sense of relief, inner peace and joy quickly moved into my life, as I was finally able to start medication again. The

feeling was quickly changed yet again. The time for recertification arose. No phone call, no letter, and again multiple phone calls

and voicemails; and the inability to get in contact with Jennifer. Beyond angry, and frustrated with lack of compassion by AHN,

and their poor operations and management; I couldn’t keep quite. I started contacting their Reno office. However, it was met with

non-expedient response. For the 4th time, my medication coverage; has lapsed again, and again I am forced to stop medication.

I searched for the facilitator of the Ryan White Program. A quick google search takes me to HRSA website, I file a complaint,

with their online complaint form. Never to receive a response, besides a automatically generated message, that my message

was being reviewed.

It is now 2013, I was thriving in my career as General Manager; until I became deathly ill. I was being riddled with

diarrhea and violent projectile vomiting. Informed by my doctor, he believed my illness was HIV related; frustrated he couldn’t

prescribe me medication, he placed a call to AHN, spoke with a different case worker, Susana; and before I left the appointment,

had gotten an appointment scheduled to reinstate my medication coverage.

A week later, I met with Susana, and at first she seemed like a breath of fresh air in comparison to Jennifer. She

seemed to actually care, and understood how “overloaded and hard to reach Jennifer can be”. By the time I had left her office,

My life with HIV & the failed system built for survival 2009-2014

she was on the phone with the pharmacy authorizing payment for my medication, so I could go over to Walgreens and pick up

my new medication.

I arrived at the pharmacy, was able to pick up my medication, until my next refill. The staff at Walgreens, which was the

new contract pharmacy assigned to handle all ADAP and RWP medication distribution; was unable to process the refill without

charging me full price in excess of $ 2,500.00 per month. The new HIV related diarrhea medication my doctor wanted to try

would not be covered; and was $1,700.00 additional per month. However I had just recertified, so I was perplexed as to why my

medication was not being covered. I reached out to AHN, without answer; leaving an urgent voicemail, and what ended up being

a week of urgent voicemails, I received a call from Susana, who told me my prescriptions were ready, and that the staff at

Walgreens didn’t know how to enter the RWP or ADAP coverage in their computer system. She explained, that they were

entering the information into their normal insurance system, rather than the government system; and should I ever experience

this issue again; that would be why, so I could explain the pharmacist job to them.

Approximately a week later while getting ready for work one day, I became violently ill again, ultimately passing out,

and knocking myself unconscious; laying on the bathroom floor. Luckily, my boyfriend came home early from work, and the gym;

to find my work clothes lying next to a plugged in iron, and he heard our cats meowing loudly from the bathroom. Walking into the

bathroom he found me still unconscious, and blue in the face; I had slipped into hypoxia. Following this frightening situation I was

advised by my doctor to take FMLA, until we could get a colonoscopy, endoscopy, and CT done; to figure out what was going on.

Trouble strikes again, the colonoscopy and endoscopy, cannot be done without a CT first, and the insurance company

is unwilling to pay for a CT. My doctor unofficially advises me of a way to get a “emergency” CT done, in the emergency room;

quickly following his advice, I get my CT done, it’s clear. After this near identical emergency room situation, this time at Saint

Rose Dominican hospital, and another painful PML test; at least we can move forward from there. Or so I thought, once the

colonoscopy and endoscopy were scheduled, I was met with opposition again; on the day of the procedure I am informed there

is a $800 copay, and the procedure cannot be performed without payment. Reluctantly, and against medical advice, I returned

on a part time basis to work, to afford my procedure; to be met on the first day with relocation, and demotion. Due to an

involuntary diarrhea onset while at work, continuation of FMLA was not an option, it was a requirement set by my employer. To

be met with a life crushing and changing termination of position upon return.

Besides the fact of now being unemployed, uninsured, and in the midst of a legal battle for wrongful termination; I was

met with the failure of the Obama care changeover; I had contacted AHN immediately upon termination, so we could meet, and

ensure that I would not have a lapse in medication and treatment again. When meeting with Susana; they helped enroll me in

Medicare, which I was informed would cover my needed procedure, however I would have to return to care, at the Wellness

Center; I would be authorized temporary approval, for 1 refill, of medication; until my Medicare came active. Which was followed

by over a month of battles with Nevada Healthlink. Essentially, they received and processed my application, but in the exchange

of my documents to the facilitating insurance agency Health Plan of Nevada, they lost me. I was told it is a 3 month process to fix

the issue. In sympathy for my struggles, from my boyfriend, and by the grace of God, my partner’s health insurance opened up;

thanks to the Affordable Care Act; so he immediately and without issue or delay put me on his Private Insurance.

I placed a call immediately to Susana at AHN, I was met again, with the voicemail run around; for over 2 weeks. The

result of that appointment; put me back on the copay assistance program; for once with only a 3 week lapse without medications.

Frustrated, but relieved; and tired of complaining to government ran and/or funded organizations, without compassion, or

appropriate communication; I was simply pleased to continue medication. Retaining more faith in Susan, than Jennifer; however

minuscule that faith was, there was still faith the system would iron out the kinks and things eventually would run smoothly. Once

everything was finally back in place; covered with medical, covered for prescriptions; in desperate need of labs before the

recertification, I was excited to schedule my appointment with my MD.

A couple of weeks pass, and still quite ill; and honestly cranky, I went to my doctor appointment. To be met at the front

desk by an office manager on mission in mind to ruin my day with her poor attitude. To which I was not willing to accept. I frankly

told her that she was being rude. Once in for my appointment, my doctor had me explain why “the volume got turned up” I

My life with HIV & the failed system built for survival 2009-2014

explained my frustration to him. I asked him who I would speak to file an official grievance against the office manager. He

informed that she is his boss, and the only way I could complain about her was to the Medical Board. Her demeanor was so

offensive to me, I did file a complaint with the medical board.

To which she responded with a letter via certified carrier, 2 days before my laboratory and follow-up appointment. The

letter stated that “we are reserving our right to refuse you service, please do not come in for your lab appointment it has be

canceled; we will continue to serve you on an emergency only basis. You need to seek future care elsewhere. Your medical files

can be requested by your new physician.” I was devastated to say the least.

I felt defeated. However, regardless of the situations surrounding it; the situation at hand was that I needed to get some

lab work done now; it’s been almost 9 months, with 2 terms of lapse in medication. And the continuation, of a severe unknown

cause illness; potentially HIV related, the hunt for a new doctor began again. And again, I was met with endless amounts of

doctors telling me “were not accepting new patients” or “my practicing specialty is ___, I don’t see HIV/infectious disease patients

any longer”. It was the beginning all over again.

June 15th

inform the pharmacist on how to properly run my prescription through the system. System refusal, due to the fact of the change

in my primary insurance I am no longer able to go to Walgreens; even though they hold the RWP and ADAP contract. I am

informed that I have to go to Optimum mail order Specialty Pharmacy. “Okay, this should be fun” is my attitude and thought

To no further surprise, it was just that; and now again; but this time through a Specialty Pharmacy, I am confronted with

the same level of incompetence as the staff at Walgreens. However armed with the knowledge and previous disappointments

and experience with Walgreens; I attempted to enlighten them. Unknowingly to me, I was speaking Tahitian; or at least I might as

well been. The entire process took in its entirety 3 hours, with no prevail. An email and put out a call to Susana; low and behold,

problem is fixed and thankfully my medication is being shipped. Apparently, the pharmacy technician at Optimum and Susana

were on the same wave length; she explained to them yet again, how to properly run the coverage. And only a week late; my

medication finally arrives.

In the interim, it’s now it’s the end of June 2014; and again it’s time for recertification. To my surprise there is for the

first time ever, a letter in my mailbox, with a scheduled appointment for recertification with Susana at AHN. My faith in her, and

that maybe the system had finally worked out the kinks skyrocketed. I’m actually hopeful for what lies ahead.

I met with Susana; 1st week of July 2014, at our meeting we discussed my situation with my doctor, and my inability to

get a current set of labs done. I fully informed her, how long it had been since my last lab test. She assured me so long as she

could get a copy from the doctor’s office everything would be fine. She had me sign a release of information for my previous

doctor. Which I gladly obliged, I attempted at that point to ask her for a referral for a doctor; she told me basically “you’re on your

own, you’ll have to call around”. “Thanks for the help, but whatever” is what I was thinking to myself.

July 1st

this time” was my hopeful thinking. Oh no; this time the delay was, due to the prior lapse, my authorization for him as the primary

insurance holder, to be allowed to act on my behalf; needed to be “retold” in order to ship out my medication. Not horrible. Still

just the red tape “we did all this already last month, I know we went through all of this already?...whatever you need me to say to

get my medication shipped out, ship it out. Yes, again I give him authorization. He is the primary on the insurance.” Problem

solved. For now.

August 1st, 2014, Yes, refill time; this time I’m honestly praying “please have this time go smoothly”. To my dismay, just

as quickly as my faith in the system was previously restored; it was slaughtered again. I was now being told “yes, we know how

to enter in the system; the system says that your RWP is being denied, due to non-compliance.

, 2014, medication refill time. Back to Walgreens; without surprise and with aggravation I am required to

, 2014, medication refill time. My boyfriend calls Optimum to get my medication refilled; “this should be easier,

My life with HIV & the failed system built for survival 2009-2014

This is ridiculous, are you kidding me. Nope, no joke; I almost immediately hop in my car saying to myself “I’m done

with this game; I’ll go down to the office and wait to speak with her, I don’t care if I have to wait all day.” I am met almost instantly

with an attitude to boot.

Me: Hi Susana, we have an issue; yet again, I can’t get my prescriptions refilled; Optimum says my coverage was terminated for

noncompliance?

Susana: Yes you have been; you never brought me your labs.

Me: What are you talking about? I signed a release of information for my previous doctor, why was that not sent out.

Susana: We never got it, the doctor is refusing to send your labs over; we can’t get him to send anything. So yes until you get

your labs, you are off the program.

Me: This is beyond ridiculous; do you realize that since your company took over the contract from AFAN I have spent more time

off medication than on? Who do you people report to so I can file a complaint?

Susana: Call the Governor.

Me: I will. And I left. Problem not solved.

I sent an email off to the office of the Governor, Consumer Healthcare. As well, I did some additional digging on the

HRSA website; the main government organization that facilitates the RWP and ADAP programs. Through my digging I finally

found the names and email addresses for the Top 3 people in charge; based out of Maryland, I sent the same email I sent to the

Governor’s office; a quick but thorough bullet point timeline of the mess of a system. After almost 2 weeks (August 13th, 2014) I

receive an email back from the Governor’s office email. Which was a joke in itself the email simply read: This is an automatically

generated Delivery Status Notification. THIS IS A WARNING MESSAGE ONLY. YOU DO NOT NEED TO RESEND YOUR

MESSAGE. Delivery to the following recipient has been delayed: cha@govcha.state.nv.us Message will be retried for 2 more

With no response from the HRSA, and absolutely no assistance coming from AHN; the “assistance program” and only

14 days of medication remaining, its fight or flight time. I went to the Ryan White Part A Clinic; the Community Outreach Clinic.

Basically gobbling for any sort of help or direction, unable to find a specialist who is accepting new patients; or practicing in their

field of specialty. Explaining my story to the case worker there; I’m informed by their eligibility technician that this is the normal

case with AHN, they see this issue daily. Begging, I tell the worker, “I am on RWP Part B; I cannot get my meds refilled until I

start seeing a doctor and get labs taken please help me.”

Finally I reached someone with a soul. He left the room for about 20 minutes. When he returns he tells me; “I’m so

sorry Brandon, even though we have the doctors and lab capabilities to provide those services here; unfortunately, we cannot

because you are on Part B and have Private Insurance. At this location we do not accept United Healthcare yet.” Instantly I’m

certain he saw how crushed and devastated I was, and he says “hold on”. He disappeared again for about 10 minutes and

returns with a little piece of paper in hand. “This is a new clinic, they’re accepting new patients, I’m going there for my HIV care

now; they specialize in HIV and just moved into the area this month, I already called for you and they accept your insurance, just

call and schedule an appointment. I wish I could help you more”. “You have been more help than anyone else in this town thank

I became aware of the clinic though a friend of a friend whom started her own HIV advocacy and awareness program

Michelle, the founder of The Mojo Bags. Had it not have been for her the door to care had pretty much been slammed in my face.

Today is August 15, 2014. I am still without RX coverage; I am still without medication, still technically without a doctor, and still

without labs. But I have a doctor’s and lab appointment set up. Then it’s back to deal with the staff at AHN, and back through the

My life with HIV & the failed system built for survival 2009-2014

circus of loops, and insufficient case management. The system meant to keep HIV positive people like myself is broken. To me

almost to the point of non-repair-ability.

That is why, I am openly, and honestly; and publicly sharing my story. Without someone speaking up no change can

ever be made. People have to become aware of the serious issues faced by people living with disease. I have never told anyone

my entire story in truth, much less told anyone, outside of my immediate circle that I have HIV or how I contracted it. I have to

believe that possibly through my truth openness, it will instill awareness and hopefully produce results. Or at least that’s my

Please, Share my story. Not only myself, but so many others out there like myself who are consistently going through

this living hell. People have to become aware. Someone eventually has to listen; hopefully through the proper channels of

sharing my message, it will land on the ears/eyes of someone who can instill the change and improvements to the system that

are so desperately needed to keep me alive, before it is too late.

My Name is Brandon Evans, I live in Las Vegas, NV. I am HIV+