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BOOKLET 2 OF 3




        HIV HEALTH & WELLNESS


Considering treatment
and your health care



                 JANUARY 2013




   your life matters
Table of contents

Using this booklet ...                                                    2
How is today different from earlier in the epidemic?                      3

KNOWLEDGE: Understanding the details of treatment
 Why take HIV medications?                       4–5
 Choosing the best time to start                 6–7
 When to start: CD4 count ranges                   8
 Classes of HIV meds                               9
 Recommended regimens for first line treatment    10
 A few things about your first regimen            11
 Understanding test results                       12
 Resistance testing before starting               13

HEALTH: Your ability to start and maintain
 Women and HIV infection                                            14–15
 Are you ready to start?                                               16
 Side effects from HIV meds                                            17
 Drug interactions                                                     18

SELF-ADVOCACY: Getting ready to start
 Getting your health care covered                                   19–21
 Is your doctor experienced in treating HIV?                           22
 Important questions to ask others                                      2

RESOURCES:
 Checklist for getting started                                          24




           HIV Health & Wellness: Considering treatment and your health care   1
Using this booklet ...

    The main focus of this booklet is to get you thinking about
    HIV and your health. Because treating HIV can be complex
    and because only you can take the medicines your body
    needs, your ability to commit to the meds are a critical part
    of your health decisions.
       Getting the earliest treatment is generally recommended
    for most illnesses. HIV may not be any different; except that
    once it’s started, treatment is for life. On one hand, deciding
    the best time to start HIV meds is a matter of personal
    choice. On the other, study results increasingly lean toward
    starting earlier.
       Some experts believe that starting meds is appropriate
    immediately after finding out your diagnosis. Waiting
    might allow HIV to progress further and do more damage
    to your immune system and to other body systems and
    organs such as your heart, blood vessels and kidneys.
       At a minimum, most doctors would agree that it’s neces-
    sary to start meds when HIV symptoms are present, your
    CD4 count is falling, or your viral load is high and rising.


                               HELPFUL RESOURCES

       Just Diagnosed Resource Center www.thebody.com/content/art49985.html




2   HIV Health & Wellness: Considering treatment and your health care
How is today different
from earlier in the epidemic?

Treating HIV is very different today
than what it was earlier in the epi-
demic. People are now healthier and
living longer on HIV meds, and
many can start with a full regimen
of just one or two pills taken once
or twice a day. There are fewer food
restrictions, and drugs are generally
easier to take and tolerate.
   Perhaps some of the things you believe about today’s
medicines are not — or are no longer — true. Concerns
still linger in the community about severe side effects and
how someone might look after being on meds for awhile.
Newer regimens generally have fewer and more manage-
able side effects. The drugs that caused the most problems
are rarely used for people starting treatment in the US.
   Over the years, public health care programs as well as
private health insurance have greatly improved their HIV
care, allowing more people to find and pay for stable medi-
cal care. The medical community also has a great deal more
experience treating HIV today.




          HIV Health & Wellness: Considering treatment and your health care   3
Why take HIV medications?
           Although most people don’t have outward symptoms
           of HIV for many years without being on treatment, it’s
           extremely rare that the immune system can fully sup-
           press HIV on its own. The longer you have untreated
           HIV the more damage it can do, making you more
           susceptible to infections and other health problems.

           IMPROVING QUALITY OF LIFE
           Being on HIV treatment
           should interfere as little as
           possible with your quality
           of life. It should be easy
           enough to use so you can
           take every dose as prescribed. For most people, it’s
           possible to find a regimen that works well with mini-
           mal side effects or drug interactions. If you cannot
           tolerate a drug or the regimen isn’t working for you,
           it’s possible to switch to other options.

           IMPROVING IMMUNE FUNCTION
           Taking HIV treatment normally produces a higher
           CD4 count. Some people experience a rapid rise in
           their CD4s after starting treatment, but for others the
           increase may take more time. This is especially true if
           you wait to start treatment until your CD4 counts are
           very low, such as below 100.



4   HIV Health & Wellness: Considering treatment and your health care
REDUCING VIRAL LOAD
HIV treatment makes it easier for the immune system to
control HIV. The goal is to keep HIV levels as low as
possible for as long as possible, preferably below 50 copies
(called undetectable). The minimum change that shows
treatment is working is lowering your virus level by 90%,
or a 1 log decrease (such as 10,000 down to 1,000).

REDUCING DRUG RESISTANCE
When HIV is fully suppressed by HIV meds, it’s less
likely to change and become resistant to the drugs.
Taking every dose as prescribed and staying undetect-
able can help prevent resistance. Most commonly
used HIV meds are so good now that they’re able to
overcome drug resistance for many years even with
one or two doses missed every once in a while.

HELPING PREVENT TRANSMISSION
People who take HIV meds and stay undetectable are
less likely to transmit HIV. However, even with good
adherence to an HIV regimen, there’s still some risk in
transmitting HIV — for
example, active sexually
transmitted diseases
(herpes, syphilis, etc.)
can increase the risk. It’s
important to continue
engaging in safer sex.




            HIV Health & Wellness: Considering treatment and your health care   5
Choosing the best time to start

           The following factors can help you and your provider
           choose the best time to start treatment.

           YOUR CD4 COUNT TREND
           A trend is when you
           look at two or more
           CD4 count results to
           see how much they
           change. Over time,
           falling CD4s indicate
           declining immune
           health. A loss of 100
           CD4s or more each
           year shows a weakening immune system. Don’t panic
           about a single lower test result, but consult with your
           doctor and consider another test to determine your
           trend. (Read more on page 8.)

           YOUR VIRAL LOAD TREND
           Increasing HIV levels over time indicate that the virus
           is reproducing and can infect more CD4s. Again, the
           trend is important: consider two or more test results
           to inform a treatment decision. Experts generally agree
           that viral load rising above 100,000 is a sign to start.




6   HIV Health & Wellness: Considering treatment and your health care
YOUR GENERAL HEALTH
If your health is good and stable, then starting treat-
ment right away may not be necessary. But if you
have some symptoms of HIV disease, despite a good
CD4 count, starting is usually the right decision. On
the other hand, if you have an illness that may make
it difficult to take HIV meds, it may be better to wait
until that illness has resolved. Your doctor can help
you make this decision.

ARE YOU READY TO START?
You should begin treatment when you feel you’re ready,
but you shouldn’t put it off until all your fear is gone.
Being ready includes being emotionally ready to com-
mit over the long-term, as well as being able to take
pills every day, manage possible side effects, and make
sure you have ongoing health care. It might also mean
dealing first with other issues such as finding stable
housing or mental health or substance use services.

THESE CONDITIONS INCREASE THE URGENCY TO START:




           HIV Health & Wellness: Considering treatment and your health care   7
When to start: CD4 count ranges

    STARTING TREATMENT BETWEEN 0–350 CD4 CELLS
    Waiting to start until a CD4 count drops below 350 puts you
    at much higher risk of developing many health problems. These
    can include conditions related to HIV (pneumonia, certain
    cancers, etc.) and other conditions (heart attacks, kidney
    disease, etc.). Almost all doctors would agree that people with
    low CD4 counts should start treatment as soon as possible.

    STARTING TREATMENT BETWEEN 350–500 CD4 CELLS
    The risk of getting sick isn’t quite as high in this range.
    Fewer studies confirm the benefits of starting in this range
    compared to lower CD4s. For this reason, you may have more
    time to get ready to start. However, it’s important to under-
    stand that some studies suggest your risk of getting sick is
    higher if you don’t start in this range. Longer-term damage
    to your body is occurring as long as HIV is not kept low.

    STARTING TREATMENT ABOVE 500 CD4 CELLS
    A couple of studies show a lower risk for getting sick in
    people who start this early. Many other studies show that
    early damage to your immune system and other parts of
    the body happen when HIV isn’t well controlled — no mat-
    ter the CD4 count. As well, people who are on treatment
    with undetectable HIV are much less likely to pass on HIV
    to their sex partners. However, even though the risk of side
    effects is much lower with modern treatment, taking meds
    longer could increase your chance of developing certain
    side effects. It’s reasonable for someone to start above 500,
    but the pros and cons should be carefully considered.


8   HIV Health & Wellness: Considering treatment and your health care
Classes of HIV meds

Your first regimen will probably include three drugs from
two different classes. These classes work against different
steps in the life cycle of HIV. Using at least two classes to-
gether provides better and longer-lasting health.
   Below is the current list of HIV meds, organized by class
and then listed by brand name, generic name and year of FDA
approval. Some drugs are no longer used or not used often
in the US, while others are used only in special situations.

NRTIs (nucleoside/nucleotide           NNRTIs (non-nucleoside
reverse transcriptase inhibitors)      reverse transcriptase inhibitors)
 Emtriva (FTC, emtricitabine, 2003)     Edurant (RPV, rilpivirine, 2011)
 Epivir (3TC, lamivudine, 1995)         Intelence (etravirine, 2008)
 Retrovir (AZT, zidovudine, 1987)       Rescriptor (delavirdine, 1997)
 Videx EC (ddI, didanosine, 2004)       Sustiva (EFV, efavirenz, 1998)
 Viread (TDF, tenofovir, 2001)          Viramune (nevirapine, 1996)
 Zerit (d4T, stavudine, 1994)
                                       ENTRY INHIBITORS
 Ziagen (ABV, abacavir, 1998)
                                        Fuzeon (T20, enfuvirtide,
PIs (protease inhibitors)                 injectable, 2003)
 Aptivus (tipranavir, 2005)             Selzentry (maraviroc, 2007
 Crixivan (indinavir, 1996)            FIXED DOSE COMBINATIONS
 Invirase (saquinavir, 2003)            Atripla (TDF+FTC+EFV, 2006)
 Kaletra (lopinavir/r, 2000)            Combivir (AZT+3TC, 1997)
 Lexiva (fosamprenavir, 2003)           Complera (RPV+TDF+FTC, 2011)
 Norvir (ritonavir, 1996)               Epzicom (3TC+ABV, 2004)
 Prezista (darunavir, 2006)             Stribild (ELV+TDF+FTC, 2012)
 Reyataz (atazanavir, 2003)             Trizivir (AZT+3TC+ABV, 2000)
 Viracept (nelfinavir, 1997)            Truvada (FTC+TDF, 2004)
INI (integrase inhibitor)
 elvitegravir (ELV, 2012)
 Isentress (raltegravir, 2007)
                         HELPFUL RESOURCES

               AIDSMeds.com      www.aidsmeds.com/list.shtml


             HIV Health & Wellness: Considering treatment and your health care   9
Recommended regimens for first
     line treatment (updated March 2012)

     The Guidelines list “preferred” and “alternative” HIV regi-
     mens. Research shows that “preferred” regimens are potent,
     better tolerated and easier to take. These are listed below.
     “Alternative” regimens are second choices but may work
     just as well. These can be found in the Guidelines.

      PREFERRED REGIMENS

     NNRTI:           Atripla (1x/day), 1 pill
                      Women should get a pregnancy test done before start-
                      ing this pill. One of the drugs in it, Sustiva (efavirenz),
                      can cause birth defects.

     PI:              Prezista/Norvir + Truvada (all 1x/day), 4 pills

     PI:              Reyataz/Norvir + Truvada (all 1x/day), 3 pills
                      People who are taking more than 20mg of omeprazole
                      (an antibiotic) should not start Reyataz.

     INI:             Isentress (2x/day) + Truvada (1x/day), 3 pills
                      This regimen is a little unusual in that one pill is taken
                      once a day while the other is taken twice a day. People
                      should not take both pills of Isentress 1x/day because it
                      does not control HIV as well as taking one pill 2x/day.

     Pregnancy: Kaletra + Combivir (all 2x/day), 4 pills

                                HELPFUL RESOURCES

        Guidelines for Treating HIV in Adults    www.aidsinfo.nih.gov/guidelines/


                                                                              
        more  recent  updates  to  the  Guidelines  for  preferred  regimens.


10   HIV Health & Wellness: Considering treatment and your health care
A few things about your first regimen

The most powerful and long-
lasting control of HIV comes
from a person’s first regimen
if taken properly. The longer
a person can stay on it with-
out major side effects or drug
resistance, the better.
    To tell if your regimen is
working, you should see a
90% drop in your viral load
within a month or two. (See
page 5.) Most people can reach an undetectable level within
six months, although it may take up to a year if you’re over 50
or have another condition like hepatitis C.
    When a person’s viral load remains undetectable for at
least one year on treatment, it usually remains that way for
at least another two years, assuming they take their meds as
prescribed. Some people have been able to stay on their first
regimen for up to eight years without having to switch. This
is true for almost any regimen.

       _______ MAIN POINTS TO REMEMBER _______

 control of HIV.

 should drop by at least 90%.

 months.



           HIV Health & Wellness: Considering treatment and your health care   11
Understanding basic test results

     VIRAL LOAD TEST
     A viral load test is used to check how well treatment is con-
     trolling HIV. It measures the number of copies of HIV in
     a small amount of blood. People starting treatment for the
     first time usually see their viral load fall to an undetectable
     level within 12–24 weeks. Several things can influence this,
     including taking the meds as prescribed and the potency of
     the regimen. Higher viral loads may take longer to respond.
     CD4 CELL COUNT
     HIV treatment helps to preserve and increase your CD4
     count, which means the immune system is getting better
     at controlling HIV and other infections. The actual increase
     will vary from person to person. If you start treatment with
     a lower CD4 (below 200) it usually takes more time to reach
     higher counts, or you may not see a large gain. Older people
     and those with hepatitis C may also have smaller gains.

     CD4 PERCENTAGE
     The CD4 percentage shows the proportion of all white blood
     cells that are CD4s, which in people living with HIV averages
     about 25% or more. This marker tends to change less often be-
     tween tests than the CD4 count, and it may be more reliable.
     A decreasing CD4% over time shows a weakening immune
     system, and one that falls below 14% is an AIDS diagnosis.

                                HELPFUL RESOURCES

                 Blood Work www.projectinform.org/publications/bw/
          Understanding Lab Results www.thebody.com/content/art14477.html




12   HIV Health & Wellness: Considering treatment and your health care
Resistance testing before starting

Drug resistance occurs when HIV mutates,
or changes enough so that a drug or
regimen doesn’t fully control it any-
more. Resistance usually occurs when
drugs are not taken as prescribed and
consistently on schedule. Some people
(about 1 out of 9 per year in the US) get
a strain of HIV with some level of resis-
tance. However, HIV is rarely resistant
to all HIV meds, so learning ahead of time which drugs it is
resistant to (if any) can help you choose the best regimen.
   The US Guidelines recommend that people get a geno-
typic resistance test before they start or change treatment.
People who choose HIV meds guided by resistance test
results have better control of HIV over time. To run a resis-
tance test, you must have a viral load above 1,000. The test
cannot be done accurately if viral load is below 50 copies.

       _______ MAIN POINTS TO REMEMBER _______

 your doctor make better treatment decisions.

 done when viral load is above 1,000.

                        HELPFUL RESOURCES

 HIV Drug Resistance Tests www.projectinform.org/publications/resistance/
   HIV Drug Resistance Mutations www.iasusa.org/resistance_mutations
         HIV Drug Resistance Database http://hivdb.stanford.edu




            HIV Health & Wellness: Considering treatment and your health care   13
Women and HIV infection

            HIV meds have not
            been studied as much
            in women. Some
            questions remain
            about the doses given
            to women. Female
            hormones may also
            affect HIV meds.
            However, the recommendations for when to start and
            what to choose are generally the same for both sexes.
            Women who are not pregnant, planning to become
            pregnant, breast-feeding or taking hormonal birth
            control can follow the same guidelines as men.
               Women sometimes experience both a higher rate
            and different types of side effects from HIV meds
            than men, likely due to differences in their weight and
            body size. In some cases side effects can persist longer
            for women than for men, but usually decline over time.
               Oral contraceptives can interact with some HIV
            meds. It’s not clear whether this actually raises the
            risk of unintentional pregnancy, but some experts
            recommend that prescriptions should be changed or
            other forms of birth control should be used.




14   HIV Health & Wellness: Considering treatment and your health care
With careful planning and ongoing care, pregnant
women can expect to have a safe pregnancy and to give
birth to an HIV-negative baby. Although HIV meds
have not been well studied in preg-
nant women, the US Guidelines rec-
ommend that all pregnant women be
on treatment to protect themselves
and their unborn babies. Some meds
appear to be safer, some can be more
problematic, and a few others should
not be used at all. When making
decisions around pregnancy, delivery
and nursing, it’s wise to consult an
HIV-experienced doctor, such as
an OB-GYN who has treated HIV-
positive women.

   _______ MAIN POINTS TO REMEMBER _______

 for women and men.

 effects than men.

 as birth control pills, pregnancy, delivery and nursing.




          HIV Health & Wellness: Considering treatment and your health care   15
Are you ready to start?

     It can be hard to take medicines and stay on them when you’re
     feeling well. It’s easier to remember and take them when you
     feel sick because you want to feel better. But HIV meds are
     taken every day — whether you feel good or feel bad.
        It’s difficult to fully grasp the meaning of “lifelong” treat-
     ment, but once you start HIV meds you need to stay on
     them. How do you feel about taking pills every day? Have
     you taken other medicines or vitamins long-term? How
     about family or friends? What were their experiences?
        Adjusting to several changes in your life at once can be
     hard. You may want to avoid starting meds before disrupt-
     ing life experiences like going on vacation, moving or start-
     ing a new job. What flexibility do you have with commit-
     ments like caring for children or volunteering? How will
     you carry your meds?
        It’s generally better to not start until you’re ready rather
     than to start and stop. You’re the expert on when you can
     start in a way that helps ensure your quality of life.


         STIGMA
         For many, privacy is an important consideration when
         taking HIV medicines. Taking them on time every day
         or going to regular doctor visits may raise suspicions of
         some people in your life. Discrimination or disapproval
         from others can make it challenging to take care of your-
         self. When possible, discretely telling people who sup-
         port you may help you stay healthier.




16   HIV Health & Wellness: Considering treatment and your health care
Side effects from HIV meds

Modern HIV regimens generally have
fewer and more manageable side effects,
and many people tolerate them quite
well. Although most people wonder or
worry about side effects, it’s impossible
to predict who will have them. Some
people have few or no side effects, while
others have ones that are more troublesome for them. The
side effects one person has from a particular medicine does
not mean everyone else will have the same ones.
   Short-term side effects (headache, fever, nausea, etc.) nor-
mally appear during the first few weeks of taking a new drug.
They often get better or disappear as your body gets used to
the meds. They can reappear due to stress or other infections.
   People with better overall health usually experience
fewer short-term side effects. If you start later when you’re
less healthy, you may experience more side effects. How-
ever, if your regimen interrupts your quality of life, you can
probably switch to another one that you can tolerate better.
   You and your doctor will keep track of long-term side
effects with routine blood tests. These can include changes
in blood fats or in certain blood proteins (such as ALT,
AST, amylase and creatinine) that point to possible problems
with certain organs, including the liver and kidneys. Over
time, these changes can progress to other conditions like
more fragile bones or kidney and liver disease.

                           HELPFUL RESOURCES

 Dealing with Drug Side Effects www.projectinform.org/publications/sideeffects/


             HIV Health & Wellness: Considering treatment and your health care    17
Drug interactions

     Drug interactions are possible whenever you take two or
     more drugs together, whether they’re prescriptions, over-
     the-counter drugs like cold medicine, recreational drugs or
     even herbal products. Even food can interact with drugs.
     The more meds you take, such as meds for high blood pres-
     sure or even erectile dysfunction, the more likely you could
     experience an interaction. This is also true about taking HIV
     meds with some herbal products, especially St. John’s Wort.
        Not only does each drug or herb have its own possible
     side effects, they may also increase or decrease the effec-
     tiveness of other drugs. Drug interactions are not always
     considered when making treatment decisions, but they can
     certainly play a major role in its success.
        Make sure your doctor knows about all the drugs and
     supplements you take, including over-the-counter products
     and recreational drugs. Your pharmacist can also be a good
     resource. Drug interaction tools are also available online.

             _______ MAIN POINTS TO REMEMBER _______

       drugs or herbal products.

       meds to avoid or correct drug interactions.



                                HELPFUL RESOURCES

                 HIV Drug Interactions www.hiv-druginteractions.org
                        Medwatch www.fda.gov/medwatch




18   HIV Health & Wellness: Considering treatment and your health care
Getting your health care covered

You may never need to file for disability, but for simplicity we
present these options in terms of pre- and post-disability.
Disability is a formal claim that must be made with your
doctor and approved by Social Security. To find programs you
may be eligible for, it’s important to consult local resources
such as benefits counselors, case managers, social workers
or attorneys as programs differ greatly from state to state.

      IF YOU HAVEN’T FILED FOR DISABILITY …

GROUP INSURANCE THROUGH YOUR EMPLOYER
If your employer covers health care, the insurance company
must cover you even if you have a pre-existing condition like
HIV. There are three types of plans: fee-for-service, preferred
provider organizations (PPOs), and health maintenance
organizations (HMOs). Plans vary in what they offer, their
fees and your choice of doctors. Choose a plan that is best
for you, and check your plan for HIV-experienced doctors.
COBRA
If you leave work due to a layoff and had insurance, then
you should be offered a continuation policy called COBRA,
which is meant to sustain you until you get other insurance.
INDIVIDUAL PRIVATE INSURANCE
Individual plans are an option, but few people with HIV
can purchase them due to high cost and restrictions on pre-
existing conditions. If you had coverage before your HIV
diagnosis, it’s likely most or everything you need will be
covered. However, out-of-pocket expenses may be high.




           HIV Health & Wellness: Considering treatment and your health care   19
Getting your health care covered, cont.

     HIGH RISK INSURANCE POOLS
     This program covers people who can’t get insurance due to
     pre-existing conditions and operates in 36 states. In addi-
     tion, under health care reform each state has a Pre-existing
     Condition Insurance Program (PCIP) in place until 2014
     when the large coverage expansions will occur.
     FEDERAL RYAN WHITE PROGRAM
     Ryan White funds a broad range of HIV services in states and
     localities, depending on their unique needs. It’s intended
     to help under- or uninsured people. If you have insurance,
     you may get help with premiums or other out-of-pocket
     costs. If you don’t have insurance, your state program may
     help you purchase it. You may also get free or very low cost
     care through HIV clinics and the AIDS Drug Assistance
     Program (ADAP). Ryan White may also fund dental and
     vision care. Check with your state AIDS program or ASO
     to see if a Ryan White program can help you.

        IF YOU HAVE AN APPROVED DISABILITY CLAIM …

     COBRA
     If you leave work due to disability and had insurance, you’ll
     be offered COBRA until you can get other insurance like
     Medicare. Coverage is often expensive. Check with a local
     ASO or state AIDS office for programs to help with out-of-
     pocket costs.
     MEDICAID
     Most people with HIV qualify for Medicaid through its
     disability category, although some women with children
     can qualify through a different program. Nearly all states


20   HIV Health & Wellness: Considering treatment and your health care
Getting your health care covered, cont.

require a disability claim, income and assets below a certain
level to qualify. Several states offer Medicaid to all childless
adults (AZ, DE, HI, MA, NY and VT), while several others
offer some benefits. States vary greatly in what they cover
and who qualifies.
MEDICARE (www.medicare.gov)
If you have held a job, you’ll likely qualify for Medicare.
However, you must wait 29 months after your disability
claim, during which you may be able to get your health care
through COBRA, Ryan White or Medicaid.

           OTHER POSSIBLE SOURCES OF HELP

PATIENT ASSISTANCE PROGRAMS (PAPs)
PAPs are run by HIV drug makers to supply meds to
people who are under- or uninsured. They differ widely
in eligibility. These are not ideal for the long-term but can
help in the short-term or in an emergency.
VETERANS ADMINISTRATION (www.hiv.va.gov)
If you’re a veteran or family member, you’re eligible for care
through the VA. VA sites are only found in some areas and
vary in their ability to provide HIV care. As a veteran, you can
access Ryan White programs, but if your VA facility is acces-
sible and offers quality HIV care, it may be a good option.

                         HELPFUL RESOURCES

 Welvista (access HIV meds for those on ADAP wait lists) www.welvista.org
             Federal resource on health care www.healthcare.gov
 Pre-existing Conditions Insurance Plans www.pcip.gov, www.pciplan.com
           List of PAPs for HIV meds www.fairpricingcoalition.org
           Social Security Administration www.socialsecurity.gov



            HIV Health & Wellness: Considering treatment and your health care   21
Is your doctor experienced
     in treating HIV?

     You will need to find a doctor who’s able and willing to treat
     HIV, ideally one who already has experience with HIV.
     Depending on how and where you get health care, you may
     not have many choices.
        Experienced doctors usually keep up with recent develop-
     ments in treating HIV. They also have a better sense of
     preventive health care. If you can, it’s also important to find
     other doctors like gynecologists, eye doctors and dentists
     who have HIV experience.
        Doctors with less or no HIV experience may need to
     consult resources that can help them provide the best
     medical care for you. Resources are available that can help
     you and your doctor make informed decisions.
        The WarmLine (National HIV/AIDS Clinicians’ Consul-
     tation Center) provides expert clinical advice to medical
     professionals. It’s available Monday–Friday, 8am–8pm,
     Eastern Time. (See below.)


                                HELPFUL RESOURCES

                   WarmLine 800-933-3413 (for doctors only),
                      www.nccc.ucsf.edu/about_nccc/warmline/
                AIDS Education Training Centers www.aids-ed.org
                  Clinical Care Options www.clinicaloptions.com
          GLMA’s Find a Provider www.glma.org, click FIND A PROVIDER
       HIVMA’s Find a Provider www.hivma.org, click FIND AN HIV PROVIDER
       AAHIVM’s Find a Provider www.aahivm.org, use REFERRALLINK at right




22   HIV Health & Wellness: Considering treatment and your health care
Important questions

FOR YOUR DOCTOR:                 FOR OTHERS:
  Do you start every                 Have you started on HIV
  patient on treatment at            meds? Why or why not?
  the same time, or on the           What was important
  same regimen? Why or               for you to understand
  why not?                           to help you make a
  Should I be concerned              decision about starting
  about HIV meds inter-              meds?
  acting with other drugs            When did you know it
  or herbs that I’m taking?          was the right time to
  Should I be concerned              start?
  about drug resistance,             What other ways do you
  and how do I keep                  keep yourself healthy?
  ahead of it?
                                     Do you know of support
  What tests or prescrip-            groups or agencies that
  tions are covered by my            help people talk about
  insurance (public or               these decisions?
  private)?
                                     How do you make sure
  How do blood tests                 you take every dose of
  inform my decision to              your meds every day?
  start treatment?
                                     How did your blood
  What vaccines do you
                                     work inform your deci-
  recommend I get? Why?
                                     sion to start?
  What if I’m not ready to
                                     Did other things affect
  start treatment?
                                     your treatment decision?
  Are there are any other
  tests that I should take           What HIV treatment
  before starting an HIV             information do you rely
  regimen?                           on? Why?




       HIV Health & Wellness: Considering treatment and your health care   23
Checklist for getting started

         I am (am not) ready to start taking HIV meds, and under-
         stand the reasons why I want (don’t want) to start.
         My CD4 count is _______.
         The trend is stable, increasing,                  decreasing.
         My viral load is _______.
         The trend is stable; increasing;                  decreasing.
         I have a good understanding of the risks and benefits of
         starting treatment according to my individual needs.
         I have thought about how HIV treatment may impact my life.
         I’ve considered the issues around taking HIV meds and oral
         birth control, or HIV meds and pregnancy.
         I have private or public insurance or another way to cover
         the cost of my doctor visits, medicines and blood work.
         I know where to go to get other types of support, like
         mental health or housing services, that will help me stay
         healthy.
         I will ask how to properly take my medicines.
         I understand how my doctor and I will check to see if my
         regimen is working.
         I know what side effects may give me the most problems, like
         nausea or diarrhea, and which likely get better over time.
         I’m aware of what I can do to help avoid or lessen side effects.
         If I want privacy when taking my meds, I’ve thought about
         how to ensure that.
         If I have questions and my doctor is not available,
         I can call _________________ or __________________.



24   HIV Health & Wellness: Considering treatment and your health care
273 Ninth Street
             San Francisco, CA 94103

        www.projectinform.org/HIVhealth/

    To order copies: booklets@projectinform.org.

To give feedback: www.projectinform.org/HIVhealth/.

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Considering Treatment and Your Health Care (Additional PLUS Reading Materials)

  • 1. BOOKLET 2 OF 3 HIV HEALTH & WELLNESS Considering treatment and your health care JANUARY 2013 your life matters
  • 2.
  • 3. Table of contents Using this booklet ... 2 How is today different from earlier in the epidemic? 3 KNOWLEDGE: Understanding the details of treatment Why take HIV medications? 4–5 Choosing the best time to start 6–7 When to start: CD4 count ranges 8 Classes of HIV meds 9 Recommended regimens for first line treatment 10 A few things about your first regimen 11 Understanding test results 12 Resistance testing before starting 13 HEALTH: Your ability to start and maintain Women and HIV infection 14–15 Are you ready to start? 16 Side effects from HIV meds 17 Drug interactions 18 SELF-ADVOCACY: Getting ready to start Getting your health care covered 19–21 Is your doctor experienced in treating HIV? 22 Important questions to ask others 2 RESOURCES: Checklist for getting started 24 HIV Health & Wellness: Considering treatment and your health care 1
  • 4. Using this booklet ... The main focus of this booklet is to get you thinking about HIV and your health. Because treating HIV can be complex and because only you can take the medicines your body needs, your ability to commit to the meds are a critical part of your health decisions. Getting the earliest treatment is generally recommended for most illnesses. HIV may not be any different; except that once it’s started, treatment is for life. On one hand, deciding the best time to start HIV meds is a matter of personal choice. On the other, study results increasingly lean toward starting earlier. Some experts believe that starting meds is appropriate immediately after finding out your diagnosis. Waiting might allow HIV to progress further and do more damage to your immune system and to other body systems and organs such as your heart, blood vessels and kidneys. At a minimum, most doctors would agree that it’s neces- sary to start meds when HIV symptoms are present, your CD4 count is falling, or your viral load is high and rising. HELPFUL RESOURCES Just Diagnosed Resource Center www.thebody.com/content/art49985.html 2 HIV Health & Wellness: Considering treatment and your health care
  • 5. How is today different from earlier in the epidemic? Treating HIV is very different today than what it was earlier in the epi- demic. People are now healthier and living longer on HIV meds, and many can start with a full regimen of just one or two pills taken once or twice a day. There are fewer food restrictions, and drugs are generally easier to take and tolerate. Perhaps some of the things you believe about today’s medicines are not — or are no longer — true. Concerns still linger in the community about severe side effects and how someone might look after being on meds for awhile. Newer regimens generally have fewer and more manage- able side effects. The drugs that caused the most problems are rarely used for people starting treatment in the US. Over the years, public health care programs as well as private health insurance have greatly improved their HIV care, allowing more people to find and pay for stable medi- cal care. The medical community also has a great deal more experience treating HIV today. HIV Health & Wellness: Considering treatment and your health care 3
  • 6. Why take HIV medications? Although most people don’t have outward symptoms of HIV for many years without being on treatment, it’s extremely rare that the immune system can fully sup- press HIV on its own. The longer you have untreated HIV the more damage it can do, making you more susceptible to infections and other health problems. IMPROVING QUALITY OF LIFE Being on HIV treatment should interfere as little as possible with your quality of life. It should be easy enough to use so you can take every dose as prescribed. For most people, it’s possible to find a regimen that works well with mini- mal side effects or drug interactions. If you cannot tolerate a drug or the regimen isn’t working for you, it’s possible to switch to other options. IMPROVING IMMUNE FUNCTION Taking HIV treatment normally produces a higher CD4 count. Some people experience a rapid rise in their CD4s after starting treatment, but for others the increase may take more time. This is especially true if you wait to start treatment until your CD4 counts are very low, such as below 100. 4 HIV Health & Wellness: Considering treatment and your health care
  • 7. REDUCING VIRAL LOAD HIV treatment makes it easier for the immune system to control HIV. The goal is to keep HIV levels as low as possible for as long as possible, preferably below 50 copies (called undetectable). The minimum change that shows treatment is working is lowering your virus level by 90%, or a 1 log decrease (such as 10,000 down to 1,000). REDUCING DRUG RESISTANCE When HIV is fully suppressed by HIV meds, it’s less likely to change and become resistant to the drugs. Taking every dose as prescribed and staying undetect- able can help prevent resistance. Most commonly used HIV meds are so good now that they’re able to overcome drug resistance for many years even with one or two doses missed every once in a while. HELPING PREVENT TRANSMISSION People who take HIV meds and stay undetectable are less likely to transmit HIV. However, even with good adherence to an HIV regimen, there’s still some risk in transmitting HIV — for example, active sexually transmitted diseases (herpes, syphilis, etc.) can increase the risk. It’s important to continue engaging in safer sex. HIV Health & Wellness: Considering treatment and your health care 5
  • 8. Choosing the best time to start The following factors can help you and your provider choose the best time to start treatment. YOUR CD4 COUNT TREND A trend is when you look at two or more CD4 count results to see how much they change. Over time, falling CD4s indicate declining immune health. A loss of 100 CD4s or more each year shows a weakening immune system. Don’t panic about a single lower test result, but consult with your doctor and consider another test to determine your trend. (Read more on page 8.) YOUR VIRAL LOAD TREND Increasing HIV levels over time indicate that the virus is reproducing and can infect more CD4s. Again, the trend is important: consider two or more test results to inform a treatment decision. Experts generally agree that viral load rising above 100,000 is a sign to start. 6 HIV Health & Wellness: Considering treatment and your health care
  • 9. YOUR GENERAL HEALTH If your health is good and stable, then starting treat- ment right away may not be necessary. But if you have some symptoms of HIV disease, despite a good CD4 count, starting is usually the right decision. On the other hand, if you have an illness that may make it difficult to take HIV meds, it may be better to wait until that illness has resolved. Your doctor can help you make this decision. ARE YOU READY TO START? You should begin treatment when you feel you’re ready, but you shouldn’t put it off until all your fear is gone. Being ready includes being emotionally ready to com- mit over the long-term, as well as being able to take pills every day, manage possible side effects, and make sure you have ongoing health care. It might also mean dealing first with other issues such as finding stable housing or mental health or substance use services. THESE CONDITIONS INCREASE THE URGENCY TO START: HIV Health & Wellness: Considering treatment and your health care 7
  • 10. When to start: CD4 count ranges STARTING TREATMENT BETWEEN 0–350 CD4 CELLS Waiting to start until a CD4 count drops below 350 puts you at much higher risk of developing many health problems. These can include conditions related to HIV (pneumonia, certain cancers, etc.) and other conditions (heart attacks, kidney disease, etc.). Almost all doctors would agree that people with low CD4 counts should start treatment as soon as possible. STARTING TREATMENT BETWEEN 350–500 CD4 CELLS The risk of getting sick isn’t quite as high in this range. Fewer studies confirm the benefits of starting in this range compared to lower CD4s. For this reason, you may have more time to get ready to start. However, it’s important to under- stand that some studies suggest your risk of getting sick is higher if you don’t start in this range. Longer-term damage to your body is occurring as long as HIV is not kept low. STARTING TREATMENT ABOVE 500 CD4 CELLS A couple of studies show a lower risk for getting sick in people who start this early. Many other studies show that early damage to your immune system and other parts of the body happen when HIV isn’t well controlled — no mat- ter the CD4 count. As well, people who are on treatment with undetectable HIV are much less likely to pass on HIV to their sex partners. However, even though the risk of side effects is much lower with modern treatment, taking meds longer could increase your chance of developing certain side effects. It’s reasonable for someone to start above 500, but the pros and cons should be carefully considered. 8 HIV Health & Wellness: Considering treatment and your health care
  • 11. Classes of HIV meds Your first regimen will probably include three drugs from two different classes. These classes work against different steps in the life cycle of HIV. Using at least two classes to- gether provides better and longer-lasting health. Below is the current list of HIV meds, organized by class and then listed by brand name, generic name and year of FDA approval. Some drugs are no longer used or not used often in the US, while others are used only in special situations. NRTIs (nucleoside/nucleotide NNRTIs (non-nucleoside reverse transcriptase inhibitors) reverse transcriptase inhibitors) Emtriva (FTC, emtricitabine, 2003) Edurant (RPV, rilpivirine, 2011) Epivir (3TC, lamivudine, 1995) Intelence (etravirine, 2008) Retrovir (AZT, zidovudine, 1987) Rescriptor (delavirdine, 1997) Videx EC (ddI, didanosine, 2004) Sustiva (EFV, efavirenz, 1998) Viread (TDF, tenofovir, 2001) Viramune (nevirapine, 1996) Zerit (d4T, stavudine, 1994) ENTRY INHIBITORS Ziagen (ABV, abacavir, 1998) Fuzeon (T20, enfuvirtide, PIs (protease inhibitors) injectable, 2003) Aptivus (tipranavir, 2005) Selzentry (maraviroc, 2007 Crixivan (indinavir, 1996) FIXED DOSE COMBINATIONS Invirase (saquinavir, 2003) Atripla (TDF+FTC+EFV, 2006) Kaletra (lopinavir/r, 2000) Combivir (AZT+3TC, 1997) Lexiva (fosamprenavir, 2003) Complera (RPV+TDF+FTC, 2011) Norvir (ritonavir, 1996) Epzicom (3TC+ABV, 2004) Prezista (darunavir, 2006) Stribild (ELV+TDF+FTC, 2012) Reyataz (atazanavir, 2003) Trizivir (AZT+3TC+ABV, 2000) Viracept (nelfinavir, 1997) Truvada (FTC+TDF, 2004) INI (integrase inhibitor) elvitegravir (ELV, 2012) Isentress (raltegravir, 2007) HELPFUL RESOURCES AIDSMeds.com www.aidsmeds.com/list.shtml HIV Health & Wellness: Considering treatment and your health care 9
  • 12. Recommended regimens for first line treatment (updated March 2012) The Guidelines list “preferred” and “alternative” HIV regi- mens. Research shows that “preferred” regimens are potent, better tolerated and easier to take. These are listed below. “Alternative” regimens are second choices but may work just as well. These can be found in the Guidelines. PREFERRED REGIMENS NNRTI: Atripla (1x/day), 1 pill Women should get a pregnancy test done before start- ing this pill. One of the drugs in it, Sustiva (efavirenz), can cause birth defects. PI: Prezista/Norvir + Truvada (all 1x/day), 4 pills PI: Reyataz/Norvir + Truvada (all 1x/day), 3 pills People who are taking more than 20mg of omeprazole (an antibiotic) should not start Reyataz. INI: Isentress (2x/day) + Truvada (1x/day), 3 pills This regimen is a little unusual in that one pill is taken once a day while the other is taken twice a day. People should not take both pills of Isentress 1x/day because it does not control HIV as well as taking one pill 2x/day. Pregnancy: Kaletra + Combivir (all 2x/day), 4 pills HELPFUL RESOURCES Guidelines for Treating HIV in Adults www.aidsinfo.nih.gov/guidelines/   more  recent  updates  to  the  Guidelines  for  preferred  regimens. 10 HIV Health & Wellness: Considering treatment and your health care
  • 13. A few things about your first regimen The most powerful and long- lasting control of HIV comes from a person’s first regimen if taken properly. The longer a person can stay on it with- out major side effects or drug resistance, the better. To tell if your regimen is working, you should see a 90% drop in your viral load within a month or two. (See page 5.) Most people can reach an undetectable level within six months, although it may take up to a year if you’re over 50 or have another condition like hepatitis C. When a person’s viral load remains undetectable for at least one year on treatment, it usually remains that way for at least another two years, assuming they take their meds as prescribed. Some people have been able to stay on their first regimen for up to eight years without having to switch. This is true for almost any regimen. _______ MAIN POINTS TO REMEMBER _______ control of HIV. should drop by at least 90%. months. HIV Health & Wellness: Considering treatment and your health care 11
  • 14. Understanding basic test results VIRAL LOAD TEST A viral load test is used to check how well treatment is con- trolling HIV. It measures the number of copies of HIV in a small amount of blood. People starting treatment for the first time usually see their viral load fall to an undetectable level within 12–24 weeks. Several things can influence this, including taking the meds as prescribed and the potency of the regimen. Higher viral loads may take longer to respond. CD4 CELL COUNT HIV treatment helps to preserve and increase your CD4 count, which means the immune system is getting better at controlling HIV and other infections. The actual increase will vary from person to person. If you start treatment with a lower CD4 (below 200) it usually takes more time to reach higher counts, or you may not see a large gain. Older people and those with hepatitis C may also have smaller gains. CD4 PERCENTAGE The CD4 percentage shows the proportion of all white blood cells that are CD4s, which in people living with HIV averages about 25% or more. This marker tends to change less often be- tween tests than the CD4 count, and it may be more reliable. A decreasing CD4% over time shows a weakening immune system, and one that falls below 14% is an AIDS diagnosis. HELPFUL RESOURCES Blood Work www.projectinform.org/publications/bw/ Understanding Lab Results www.thebody.com/content/art14477.html 12 HIV Health & Wellness: Considering treatment and your health care
  • 15. Resistance testing before starting Drug resistance occurs when HIV mutates, or changes enough so that a drug or regimen doesn’t fully control it any- more. Resistance usually occurs when drugs are not taken as prescribed and consistently on schedule. Some people (about 1 out of 9 per year in the US) get a strain of HIV with some level of resis- tance. However, HIV is rarely resistant to all HIV meds, so learning ahead of time which drugs it is resistant to (if any) can help you choose the best regimen. The US Guidelines recommend that people get a geno- typic resistance test before they start or change treatment. People who choose HIV meds guided by resistance test results have better control of HIV over time. To run a resis- tance test, you must have a viral load above 1,000. The test cannot be done accurately if viral load is below 50 copies. _______ MAIN POINTS TO REMEMBER _______ your doctor make better treatment decisions. done when viral load is above 1,000. HELPFUL RESOURCES HIV Drug Resistance Tests www.projectinform.org/publications/resistance/ HIV Drug Resistance Mutations www.iasusa.org/resistance_mutations HIV Drug Resistance Database http://hivdb.stanford.edu HIV Health & Wellness: Considering treatment and your health care 13
  • 16. Women and HIV infection HIV meds have not been studied as much in women. Some questions remain about the doses given to women. Female hormones may also affect HIV meds. However, the recommendations for when to start and what to choose are generally the same for both sexes. Women who are not pregnant, planning to become pregnant, breast-feeding or taking hormonal birth control can follow the same guidelines as men. Women sometimes experience both a higher rate and different types of side effects from HIV meds than men, likely due to differences in their weight and body size. In some cases side effects can persist longer for women than for men, but usually decline over time. Oral contraceptives can interact with some HIV meds. It’s not clear whether this actually raises the risk of unintentional pregnancy, but some experts recommend that prescriptions should be changed or other forms of birth control should be used. 14 HIV Health & Wellness: Considering treatment and your health care
  • 17. With careful planning and ongoing care, pregnant women can expect to have a safe pregnancy and to give birth to an HIV-negative baby. Although HIV meds have not been well studied in preg- nant women, the US Guidelines rec- ommend that all pregnant women be on treatment to protect themselves and their unborn babies. Some meds appear to be safer, some can be more problematic, and a few others should not be used at all. When making decisions around pregnancy, delivery and nursing, it’s wise to consult an HIV-experienced doctor, such as an OB-GYN who has treated HIV- positive women. _______ MAIN POINTS TO REMEMBER _______ for women and men. effects than men. as birth control pills, pregnancy, delivery and nursing. HIV Health & Wellness: Considering treatment and your health care 15
  • 18. Are you ready to start? It can be hard to take medicines and stay on them when you’re feeling well. It’s easier to remember and take them when you feel sick because you want to feel better. But HIV meds are taken every day — whether you feel good or feel bad. It’s difficult to fully grasp the meaning of “lifelong” treat- ment, but once you start HIV meds you need to stay on them. How do you feel about taking pills every day? Have you taken other medicines or vitamins long-term? How about family or friends? What were their experiences? Adjusting to several changes in your life at once can be hard. You may want to avoid starting meds before disrupt- ing life experiences like going on vacation, moving or start- ing a new job. What flexibility do you have with commit- ments like caring for children or volunteering? How will you carry your meds? It’s generally better to not start until you’re ready rather than to start and stop. You’re the expert on when you can start in a way that helps ensure your quality of life. STIGMA For many, privacy is an important consideration when taking HIV medicines. Taking them on time every day or going to regular doctor visits may raise suspicions of some people in your life. Discrimination or disapproval from others can make it challenging to take care of your- self. When possible, discretely telling people who sup- port you may help you stay healthier. 16 HIV Health & Wellness: Considering treatment and your health care
  • 19. Side effects from HIV meds Modern HIV regimens generally have fewer and more manageable side effects, and many people tolerate them quite well. Although most people wonder or worry about side effects, it’s impossible to predict who will have them. Some people have few or no side effects, while others have ones that are more troublesome for them. The side effects one person has from a particular medicine does not mean everyone else will have the same ones. Short-term side effects (headache, fever, nausea, etc.) nor- mally appear during the first few weeks of taking a new drug. They often get better or disappear as your body gets used to the meds. They can reappear due to stress or other infections. People with better overall health usually experience fewer short-term side effects. If you start later when you’re less healthy, you may experience more side effects. How- ever, if your regimen interrupts your quality of life, you can probably switch to another one that you can tolerate better. You and your doctor will keep track of long-term side effects with routine blood tests. These can include changes in blood fats or in certain blood proteins (such as ALT, AST, amylase and creatinine) that point to possible problems with certain organs, including the liver and kidneys. Over time, these changes can progress to other conditions like more fragile bones or kidney and liver disease. HELPFUL RESOURCES Dealing with Drug Side Effects www.projectinform.org/publications/sideeffects/ HIV Health & Wellness: Considering treatment and your health care 17
  • 20. Drug interactions Drug interactions are possible whenever you take two or more drugs together, whether they’re prescriptions, over- the-counter drugs like cold medicine, recreational drugs or even herbal products. Even food can interact with drugs. The more meds you take, such as meds for high blood pres- sure or even erectile dysfunction, the more likely you could experience an interaction. This is also true about taking HIV meds with some herbal products, especially St. John’s Wort. Not only does each drug or herb have its own possible side effects, they may also increase or decrease the effec- tiveness of other drugs. Drug interactions are not always considered when making treatment decisions, but they can certainly play a major role in its success. Make sure your doctor knows about all the drugs and supplements you take, including over-the-counter products and recreational drugs. Your pharmacist can also be a good resource. Drug interaction tools are also available online. _______ MAIN POINTS TO REMEMBER _______ drugs or herbal products. meds to avoid or correct drug interactions. HELPFUL RESOURCES HIV Drug Interactions www.hiv-druginteractions.org Medwatch www.fda.gov/medwatch 18 HIV Health & Wellness: Considering treatment and your health care
  • 21. Getting your health care covered You may never need to file for disability, but for simplicity we present these options in terms of pre- and post-disability. Disability is a formal claim that must be made with your doctor and approved by Social Security. To find programs you may be eligible for, it’s important to consult local resources such as benefits counselors, case managers, social workers or attorneys as programs differ greatly from state to state. IF YOU HAVEN’T FILED FOR DISABILITY … GROUP INSURANCE THROUGH YOUR EMPLOYER If your employer covers health care, the insurance company must cover you even if you have a pre-existing condition like HIV. There are three types of plans: fee-for-service, preferred provider organizations (PPOs), and health maintenance organizations (HMOs). Plans vary in what they offer, their fees and your choice of doctors. Choose a plan that is best for you, and check your plan for HIV-experienced doctors. COBRA If you leave work due to a layoff and had insurance, then you should be offered a continuation policy called COBRA, which is meant to sustain you until you get other insurance. INDIVIDUAL PRIVATE INSURANCE Individual plans are an option, but few people with HIV can purchase them due to high cost and restrictions on pre- existing conditions. If you had coverage before your HIV diagnosis, it’s likely most or everything you need will be covered. However, out-of-pocket expenses may be high. HIV Health & Wellness: Considering treatment and your health care 19
  • 22. Getting your health care covered, cont. HIGH RISK INSURANCE POOLS This program covers people who can’t get insurance due to pre-existing conditions and operates in 36 states. In addi- tion, under health care reform each state has a Pre-existing Condition Insurance Program (PCIP) in place until 2014 when the large coverage expansions will occur. FEDERAL RYAN WHITE PROGRAM Ryan White funds a broad range of HIV services in states and localities, depending on their unique needs. It’s intended to help under- or uninsured people. If you have insurance, you may get help with premiums or other out-of-pocket costs. If you don’t have insurance, your state program may help you purchase it. You may also get free or very low cost care through HIV clinics and the AIDS Drug Assistance Program (ADAP). Ryan White may also fund dental and vision care. Check with your state AIDS program or ASO to see if a Ryan White program can help you. IF YOU HAVE AN APPROVED DISABILITY CLAIM … COBRA If you leave work due to disability and had insurance, you’ll be offered COBRA until you can get other insurance like Medicare. Coverage is often expensive. Check with a local ASO or state AIDS office for programs to help with out-of- pocket costs. MEDICAID Most people with HIV qualify for Medicaid through its disability category, although some women with children can qualify through a different program. Nearly all states 20 HIV Health & Wellness: Considering treatment and your health care
  • 23. Getting your health care covered, cont. require a disability claim, income and assets below a certain level to qualify. Several states offer Medicaid to all childless adults (AZ, DE, HI, MA, NY and VT), while several others offer some benefits. States vary greatly in what they cover and who qualifies. MEDICARE (www.medicare.gov) If you have held a job, you’ll likely qualify for Medicare. However, you must wait 29 months after your disability claim, during which you may be able to get your health care through COBRA, Ryan White or Medicaid. OTHER POSSIBLE SOURCES OF HELP PATIENT ASSISTANCE PROGRAMS (PAPs) PAPs are run by HIV drug makers to supply meds to people who are under- or uninsured. They differ widely in eligibility. These are not ideal for the long-term but can help in the short-term or in an emergency. VETERANS ADMINISTRATION (www.hiv.va.gov) If you’re a veteran or family member, you’re eligible for care through the VA. VA sites are only found in some areas and vary in their ability to provide HIV care. As a veteran, you can access Ryan White programs, but if your VA facility is acces- sible and offers quality HIV care, it may be a good option. HELPFUL RESOURCES Welvista (access HIV meds for those on ADAP wait lists) www.welvista.org Federal resource on health care www.healthcare.gov Pre-existing Conditions Insurance Plans www.pcip.gov, www.pciplan.com List of PAPs for HIV meds www.fairpricingcoalition.org Social Security Administration www.socialsecurity.gov HIV Health & Wellness: Considering treatment and your health care 21
  • 24. Is your doctor experienced in treating HIV? You will need to find a doctor who’s able and willing to treat HIV, ideally one who already has experience with HIV. Depending on how and where you get health care, you may not have many choices. Experienced doctors usually keep up with recent develop- ments in treating HIV. They also have a better sense of preventive health care. If you can, it’s also important to find other doctors like gynecologists, eye doctors and dentists who have HIV experience. Doctors with less or no HIV experience may need to consult resources that can help them provide the best medical care for you. Resources are available that can help you and your doctor make informed decisions. The WarmLine (National HIV/AIDS Clinicians’ Consul- tation Center) provides expert clinical advice to medical professionals. It’s available Monday–Friday, 8am–8pm, Eastern Time. (See below.) HELPFUL RESOURCES WarmLine 800-933-3413 (for doctors only), www.nccc.ucsf.edu/about_nccc/warmline/ AIDS Education Training Centers www.aids-ed.org Clinical Care Options www.clinicaloptions.com GLMA’s Find a Provider www.glma.org, click FIND A PROVIDER HIVMA’s Find a Provider www.hivma.org, click FIND AN HIV PROVIDER AAHIVM’s Find a Provider www.aahivm.org, use REFERRALLINK at right 22 HIV Health & Wellness: Considering treatment and your health care
  • 25. Important questions FOR YOUR DOCTOR: FOR OTHERS: Do you start every Have you started on HIV patient on treatment at meds? Why or why not? the same time, or on the What was important same regimen? Why or for you to understand why not? to help you make a Should I be concerned decision about starting about HIV meds inter- meds? acting with other drugs When did you know it or herbs that I’m taking? was the right time to Should I be concerned start? about drug resistance, What other ways do you and how do I keep keep yourself healthy? ahead of it? Do you know of support What tests or prescrip- groups or agencies that tions are covered by my help people talk about insurance (public or these decisions? private)? How do you make sure How do blood tests you take every dose of inform my decision to your meds every day? start treatment? How did your blood What vaccines do you work inform your deci- recommend I get? Why? sion to start? What if I’m not ready to Did other things affect start treatment? your treatment decision? Are there are any other tests that I should take What HIV treatment before starting an HIV information do you rely regimen? on? Why? HIV Health & Wellness: Considering treatment and your health care 23
  • 26. Checklist for getting started I am (am not) ready to start taking HIV meds, and under- stand the reasons why I want (don’t want) to start. My CD4 count is _______. The trend is stable, increasing, decreasing. My viral load is _______. The trend is stable; increasing; decreasing. I have a good understanding of the risks and benefits of starting treatment according to my individual needs. I have thought about how HIV treatment may impact my life. I’ve considered the issues around taking HIV meds and oral birth control, or HIV meds and pregnancy. I have private or public insurance or another way to cover the cost of my doctor visits, medicines and blood work. I know where to go to get other types of support, like mental health or housing services, that will help me stay healthy. I will ask how to properly take my medicines. I understand how my doctor and I will check to see if my regimen is working. I know what side effects may give me the most problems, like nausea or diarrhea, and which likely get better over time. I’m aware of what I can do to help avoid or lessen side effects. If I want privacy when taking my meds, I’ve thought about how to ensure that. If I have questions and my doctor is not available, I can call _________________ or __________________. 24 HIV Health & Wellness: Considering treatment and your health care
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