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Approved....but

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               My application to re-certify my participation in the Pennsylvania ADAP program, also known as SPBP (Special Pharmaceutical Benefits Program), funded by Ryan White. To recap, this is a program that pays for HIV medications that keep the HIV virus under control and suppressed. Allowing patients easy access to this medication is key in lowering transmission and keeping individuals healthy so they can live productive lives. That said, it is getting harder to receive approval to participate in this program to the point that people are being denied/rejected multiple times and for trivial clerical errors that include missing dates, signatures, and the type of form submitted.

                 In the last blog I indicated that I contacted the AIDS Law project to get help with these issues. I received a phone call this afternoon from SPBP to tell me that my application was approved. They also indicated that they had received a message from the AIDS Law Project concerning it. I did not want to contact the AIDS Law Project and I should not have had to do so. I often hear people tell me that I should be patient when working through these issues. I was patient and happily did so between the multiple rejection letters I received from SPBP. Furthermore, no one should be told to be patient when it comes to obtaining access to physical needs like medication that keeps in the land of the living and prevents transmission of HIV to others. In this instance, it is OK to get mad, be persistent, and take action until your voice is heard.

              

Investigating Magellan

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          In my last blog I noted how my application was denied because I did not put a date on a letter from my employer. I faxed the letter to SPBP as requested and when I called SPBP this morning about the status of my SPBP renewal application they said that it was rejected because the letter was not signed. Specifically, the person stated "that letter could be from anyone". What exactly does this statement mean? Is my HIV diagnosis not enough? Perhaps I forgot that I make too much money to qualify for SPBP? So I emailed the updated signed letter my employer gave me (I did not realize my employer gave me a signed and an unsigned copy). What is curious about these denials is that my renewal application is not being denied because the information I am providing is illegitimate, it is being denied for trivial things like dates and signatures.

          That said, Magellan, who administers the SPBP application process is contracted by the State. As it has been explained to me, Magellan is paid every time it touches an application for SPBP benefits. One only needs to ask, is Magellan unnecessarily rejecting applicants for such trivial and unneeded information in order to be paid more money from the State of Pennsylvania? I did a little searching to find out how I can report suspected fraud or abuse in government programs by vendors. Within these results the Pennsylvania Office of Inspector General website was displayed in the search results. The page listed an online complaint form, unfortunately, the website is in need of some maintenance because I received an error when trying to report suspected fraud.....which is alarming to say the least.

          Being the persistent person that I am-not to mention almost running out of benefits and possibly medication, I called the toll free number 1-877-888-7927 "To report suspected fraud, waste, misconduct, or abuse in Commonwealth programs, operations, or contracts" according to the website. I spoke to a receptionist who then transferred me to an "Inspector George". Upon speaking with Inspector George, I could hear laughter in the background and how Inspector George was not taking my complaint seriously. In fact, Inspector George made no effort to help me and knew nothing about the SPBP program or the fact that the State of Pennsylvania has a contract with a vendor like Magellan. I am willing to admit I may have called the incorrect department, however, Inspector George made no effort to help a Pennsylvania Citizen get to the right place in order to get the help they needed. Indeed, I had to repeat the name of both Magellan and the SPBP program to Inspector George almost a dozen times.

            Frustrated and discouraged, I called the AIDS Law project of Philadelphia to seek additional help in investigating the issues that are being experienced with Magellan. If you are living in Pennsylvania, I urge you to call the Office of Inspector General at the number listed above. I understand if you are afraid of disclosing your HIV status as this person was not helpful. In the meantime, I am going to continue contacting my State legislators to see if there is anything else I can do. The saga continues....

Denied

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               In the last blog entry we highlighted how the SPBP (Special Pharmaceutical Benefits Program) has become over-burdensome to the point that some are dropping out of care or not applying altogether. After submitting all of the paperwork and proof of income and other documentation just shy of a blood test and a colonic map,I received the following denial letter. Lets review each page at a time.

Page 1

       This letter identifies the reason that my renewal application for SPBP was denied. Specifically, it states that information I provided was "missing or illegible". First, the information was not illegible because it was typed, not hand written. Second, the information SPBP stated that was missing that caused my renewal application to be denied was simply this: A date was missing from the letter of employment from my employer. Here we can see bureaucracy gone awry. My renewal application was not denied because I did not have HIV or that the letter was unreadable or illegitimate, it was because the letter was not dated.

             Furthermore, the impetus to request income for programs like these is absolutely ludicrous. Why? It is ridiculous to request income information or place income caps on these social programs because, to put it simply, the wealthy have a strong desire to "avoid long waits" and that they can obtain services at their convenience instead of waiting "upon the convenience of the system" (Kendall, 2012, p. 480, para. 4). Do they think everyone just has $3000 dollars just lying around somewhere? SPBP.....have you met the contemporary American economy?

mydenialpage1.jpg

Page 2

               The second page of the denial letter highlights another issue. These programs often stigmatize their poor populations while they are seeking help. Page 2 of the denial letter says that I have the right to a fair hearing. A fair hearing? For what? Did I break the law? Am I a criminal? Apparently, when you need help, you are. "To  be stigmatized is to have others act disapprovingly toward us in such a way that we feel badly about ourselves" (Lamanna & Riedmann, 2012, p. 81, para. 1). This is exactly what this form accomplishes.

mydenialpage2.jpg
Page 3

          Page 3 of the denial letter from SPBP is simply a continuation of page 2. Completing and returning this page will allow you to appeal the denial. However this denial is meant to be taken it proves that the entire application process is a deterrent to applying for benefits that restrict access to medication and care for anyone seeking treatment. It also highlights just how far behind other countries the United States and Pennsylvania are in managing their social programs.

mydenialpage3.jpg


               Finally, the fact that our government is increasingly outsourcing administration of social programs is of a particular concern to me. First, for-profit organizations are not in business to help the poor, they are in business to make money. Thus, these programs become less about providing care and more of a way to make money. Meaning, a for-profit organization will consider profit above caring for patients. The cost to the public may be too high because treatment is key in keeping a person virally suppressed, which in turn prevents transmission. As a recent CDC article stated, the transmission rate of a virally suppressed person is 0 or near 0. The application process and constant renewal of applications are barriers to care and only serve to increase transmission rates and poorer health outcomes for patients.

6 Easy Steps Toward Improving the Pennsylvania ADAP Program and HIV Care


1. Eliminate income caps
2. End names based reporting
3. Eliminate 6 month renewal
4. Ban the use of for-profit organizations as administrators of social programs
5. Stop stigmatizing the people this program is intended to help
6. Remove the requirement forcing patients to disclose CD4 and Viral Load information-(Adherence is only one of many factors that contribute to viral suppression.)

               As of now, I sent in a new letter from my employer that is dated. I am currently awaiting a new determination from SPBP. Until my application is approved, I have only 30 days of medication remaining to keep me virally suppressed.
              
Sources:

Lamanna, Mary Ann; Riedmann, Agnes. Marriages, Families, & Relationships. Belmont, CA:

Wadsworth, Cengage Learning, 2012. Print.

In-Text citation: (Kendall, 2012, p. 480, para. 4), (Lamanna & Riedmann, 2012, p. 81, para. 1)


                    It's that time of year again when anyone living in Pennsylvania must reapply for pharmaceutical coverage under Pennsylvania's ADAP program, also known as SPBP (Special Pharmaceutical Benefit Program). This program was once a high quality, beneficial, comprehensive, and supportive program to people living with HIV. Unfortunately, the quality of this program has begun to suffer because Pennsylvania has outsourced administration of this program to Magellan and PACE. Furthermore, the grant that pays for this program places additional requirements on patients who need this life saving medication (HIV can still kill you without medication remember?).

                    As a result of these changes, and others over the years, a combination of the Federal Government requirements and the administration by Magellan and PACE have made the application process burdensome. This has resulted in cause for anxiety for many patients who need this medication. So, I thought I would review this application in my blog for everyone living in Pennsylvania (Please consult your case manager for additional assistance if you need it! That is what they are there for!). You will see how this application in itself is a barrier to care. It is confusing and any mistake will result in a denial of service for medication. As we all know a denial can mean a delay in obtaining medication, which in turn increases the likelihood of medication resistance and increases in viral load resulting in what? Higher transmission rates!

PAGE 1 - A.K.A - Let's confuse the hell out of our patients.

     The first page looks innocent enough right? WRONG. See that box titled "SPBP Eligibility Mandatory Criteria"? The third criteria states "Your prescribing physician must sign and date page 5." (SPBP Application). First, why the hell would anyone be applying to a program to pay for HIV medications that does not have HIV? Second, if a person is REAPPLYING for the program the box to the right states that the physician's signature is "Not Required". Seems simple enough right? Think again. Your physician or nurse practitioner is still required to provide a signature on page 4 of the application. Every patient is also required to disclose CD4 and Viral Load information (we'll get to that in a minute). This page represents the first barrier to care.

Page1.jpgPage 2 - This page is relatively straight forward.
Nothing to worry about here, just need to provide simple name, address, phone number, and demographic information.
Except for that little part about requiring you to disclose whether or not you have a case manager. Forgetting to check this box may result in a denial letter. Better cross those t's and dot those i's.

Page2.jpgPage 3 - DANGER WILL ROBINSON! DANGER!

You better make sure that you provide a copy of current insurance or be ready to explain WHY you do not have insurance. Hmmmm....what could be a reason why someone with HIV is applying for SPBP and does not have insurance? Could it be insurance affordability or perhaps that fact a person will die without the medication? This section represents yet another barrier to HIV care.

Page3.jpg

Page 4 - Remember that comment about page 4 from above?

Here is the page I mentioned above in page 1. Make sure you still get your prescribing clinician's signature along with your CD4 or Viral Load count from your last test. Failing to provide this information will result in denial of service. Also, be sure to check off that little box below regarding income. Apparently, forgetting to check this box causes problems also.
Page4.jpg

Page 5 - Proof that you have HIV.

If you have just received an HIV + Diagnosis, I am sorry...please do not let this application discourage you from obtaining access to treatment. Take care of your health! Even if the Pennsylvania ADAP program prevents you from doing so. Finally, this section is just really stupid. Why would anyone be applying for a program that does not have HIV? The drugs have no psychoactive effect and there are better ways of determining if SPBP is being used for other purposes without alienating and stressing out patients...trust me, the HIV stigma causes more than enough stress. Still....if you do not get this page signed what happens?  DENIED.
Page5.jpg

Pages 6 and 7 - What would obtaining medical treatment be in a country that values profit over care than requiring you to release private information! YAY! Seriously, this needs to be signed or you will be denied care.

Page6.jpg

Page 7 (Page 6 Continued)

Page7.jpg

Page 8 - Last, but not least, page 8.

This page is also one of the few pages that are fairly straight forward.....if unnecessary and burdensome to people living with HIV.
Page8.jpg

                To put things into perspective, the application for SPBP used to comprise a single page and one could easily obtain the medications needed to keep living a healthy life. However, the program requirement changes and the involvement of for-profit organizations in the administration of a health care program have degraded service, put up barriers to care, and potentially delay access to medications that can lead to increased transmission rates. According to the person I spoke with at SPBP when completing my own application to ensure that I would not be denied for not dotting an "i" on page 53 of paragraph 4 section 32b....the grant that pays for the SPBP program requires this information. When I asked why, they could not, or would not, answer that question. I think this is a question that we all deserve an answer to. This information is private and is something that is not required for other illnesses. I can see how it might be used as a tool to reduce transmission, but at what expense? By denying a person access to life saving care? That defeats the purpose of the program.

               Another thing about this lengthy application is that the Federal Government, Pennsylvania Department of Health, and the Pennsylvania Department of Public Welfare is they are more concerned with protecting their assets than protecting the welfare and the health of their citizens. These barriers have also caused people to drop out of care, which is linked to a cascade effect that results in only 25% of HIV patients receiving the care they need to remain virally suppressed. Keeping the HIV virus suppressed is key to reducing HIV transmission. However, the Pennsylvania ADAP program application does little to help reduce this cascade. If anything, it decreases access to care. To the State of Pennsylvania I say this....please stop outsourcing our government to for-profit organizations. The unnecessary and over burdensome requirements of this application have resulted in reduced quality of care and are causing people to drop out of care.

A Caring Home

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      If I could use one word to describe my medical care, I would have to say it was excellent.  My Primary Care doctor, Dr. David Stein of Primary Care Associates, is warm, caring, and compassionate.  I thank him and everyone there for the amazing care I have received since I was diagnosed fourteen years ago.  During a therapy appointment I was made aware of a new practice that had opened, right here, in Bethlehem, PA.  I heard that it was a simple and modest yet inviting and welcoming office.  While the practice does primarily focus on health care of the LGBT community and HIV prevention and care, it is accepting of all individuals seeking high quality health care.  One thing that is unique about this practice is it accepts no health insurance.  It is strictly a cash and carry medical provider.  I decided to pay the owner and resident nurse practitioner Allen Smith at Novus a visit.

     Upon arriving at Novus, I almost drove right past it because it looks like a real home.  In fact, I was almost hesitant to enter were it not for the medical test box and commercial mailboxes on the well maintained front porch.  Upon entering the practicwaitroomweb.jpge a warm and inviting waiting area greets you with hard wood floors, furnished with leather sofas.  The waiting area is welcoming, therapeutic, and centered around the patient.  Waiting for any type of result can be stressful, so these touches can go a long way to helping a person relax during a medical visit, especially if one is waiting for the results of an HIV test.  In addition to the decor, the waiting room offers a refurbished antique refrigerator stocked with free beverages.  Behind the waiting area is the reception desk, examination room, and lab. 

That sounds expensive. How is the Medical Care?

     You're probably thinking that the decor and creature comforts are great, but what about the care?  All of those things sound expensive for a practice that does not accept insurance, is it expensive?  The answer is no.  A visit to Novus only costs $40 and covers the entire visit and STI and HIV testing is completely free through a grant.  Additionally, the quality of care provided by Novus is very high.  A typical large practice will usually see a patient for an average of only 15 minutes, regardless of what is needed in order to make money.  The time Novus spends with a patient varies from 15 Minutes to 45 Minutes or more depending on what the patient needs. 
labweb.JPG
     The reason Novus does not have to charge so much for their services is because they do not have to deal with the time consuming and expensive headaches of medical insurance companies, which requires a practice to have greater overhead because they must have a larger administrative staff.  Finally, Novus does not have to inflate costs because an insurer only reimburses a percentage of the cost of care.  You will be shocked and very pleased with how much Novus charges for lab tests.  The last bill I received from Quest Diagnostics for my lab work was more than $1000!  To see a list of the cost for routine lab work at Novus visit their site.

What are the visits like?

     I registered in the reception area and was seen almost immediately.  I was taken into the lab area for my blood work (pictured above), which is even nicer than the waiting room because the other side of the lalabweb2.JPGb (pictured next) is also furnished like the waiting room and surrounded by windows.  It is open, but private.  I hate when I have to give blood, but this experience was much more pleasant than the typical sterile lab.  In this instance I was in and out in about 20 minutes.  I went back later for a routine physical after I had my routine HIV lab work completed, which came back undetectable (Go Me).  My physical appointment took slightly longer.


     At my physical Allen took me into the examination room (pictured next).  Allen performed all of the typical vital sign examinations that included respiratory, blood pressure, and heart rate etc.  Allen then took the time to talk to me and find out how I was doing.  By taking this time with me, we discovered that I needed the flu and pnuemovax vaccines. examroomweb.JPG Additionally, we discussed my medical history and any mental health issues like PTSD (Post Traumatic Stress Disorder) and SAD (Social Anxiety Disorder).  We also determined that I may need to update some other vaccines as well. The point is, spending time with patients is important because it helps uncover any medical maintenance that may be needed, which allows for much better health outcomes.  On that note, all of my STI tests came back negative (Go Me Again).  Not only did I receive excellent care at my visit, I was treated like a human being and I did not have to take out a loan to pay for a simple office visit or buy a filing cabinet for the numerous letters I would have received from the insurance company for just one visit. 

About Allen Smith

     Allen Smith is a nurse practitioner with 20 years of experience.  He also has a passion of training and tries to provide it in his spare time.  His goal was always to start his own practice and genuinely cares for people living with HIV.  To learn more about Allen, his biography can be found here. It was a pleasure to meet Allen and I look forward to receiving my care from Novus in the future. 

     Finally, take the time to get tested.  When you do decide to take care of your health, I would recommend doing your testing at Novus.  The Rockwellian style practice is the right balance between care and cost.  To learn more about Novus visit http://www.novusacs.com You're not DDF until you've been tested.


Paying People For Adherence Is Alarming

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     I felt compelled to respond to Peter Staley's blog regarding paying people to end HIV.  While I agree we should try any strategy possible in order to reduce HIV transmission, especially when taking ARV therapy will reduce transmission, using extrinsic motivation to achieve compliance with any chronic illness may be harmful in the long term.  Does no one find it alarming that a person must be extrinsically motivated to maintain their own health?  Should this not be something that should be innate in everyone?  What are the long term consequences of using such a method?

     I think we need to very carefully look at the advantages and disadvantages of using the P4P4P method to achieve adherence.  One risk to using this method is that HIV brings with it other issues.  For example, If we look at people living with HIV, research shows that many are diagnosed with PTSD.  Anyone who develops PTSD may engage in riskier activities such as drug abuse or unprotected sex as a means of escape or self medication.  Additionally, low socioeconomic status is associated with HIV transmission.  If an extrinsic motivator such as money is used, the right amount of money would need to be considered because not providing enough may increase transmission, not reduce it. 

     For example, say a person is HIV positive, homeless and addicted to crystal meth and the person is admitted to a program using payment in order to achieve adherence.  I think that the amount of money used as the motivator to achieve adherence should be proportionate to what is needed to achieve the individual's safety and security needs.  Thus, using this example, (ideally) it may be necessary to provide shelter, clothing, and food to this individual until the person can be rehabilitated to a point where they are self sufficient.  What if the person is only paid $50 bucks and given a bottle of pills?  Would this person use this money to buy more crystal meth leading to further non-compliance and further transmission?  More importantly, are we teaching people that a person must be paid to take care of their health?

     Indeed, research regarding extrinsic and intrinsic motivation in activities has shown a decrease in lessening the interest of the individual in the activity they were engaged in (1).  In some cases extrinsic motivation may increase a person's desire to perform well.  This will occur if the reward provided comes with "no strings attached" (2).  However, in this case, I think the extrinsic motivator (paying people to care for themselves) is being used as a means to control behavior (take medication), which may inhibit the intrinsic motivation (internal desire to care for one's own health) (3).

     Finally, have we as a society devolved to a point where we no longer maintain an innate desire to care for ourselves?  Have we finally reached a point where we are so desperate that we will try anything to reduce transmission even if it means possibly exacerbating the pandemic? I can understand why this program is so controversial.  In my opinion P4P4P is dangerous because it may address adherence short term, but the long term consequences may be more catastrophic.  Therefore, this is not a program I can support.

Sources

(1), (2), (3) - Huffman, Karen. (2012). Psychology in Action. Danvers, MA: John Wiley & Sons Inc.. Print.


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