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Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

My Survivorship A to Z Guide

Managing Your Care Essential

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Note: This is a sample Survivorship A to Z Guide for a fictitious person we call John. John is just diagnosed with HIV. To view a summary of his answers which led to this Guide, click here.

To get your own free, computer-generated A to Z Guide, click here.

Finding a doctor who specializes in HIV is invaluable.

You indicated that you have a primary care physician but not an oncologist (a specialist in treating cancer.) It would be ideal if you had both because their functions are different.. A primary care physician takes care of your overall health. An oncologist has experience with a particular illness and up-to-date knowledge. People with oncologists have the best outcomes for HIV. 

 

When choosing a hospital: Decide whether to use a rural or urban hospital. Consider the hospital's track record with your procedure/condition, staff quality and infection rates. To maximize your stay, a patient advocate is almost a necessity. [Tell me more]

If you enter the hospital through the front door, there is usually time to choose which hospital. If you've taken our suggestion for choosing a doctor, you have already considered the quality of the hospital with which he or she can work (has "privileges.")

Look for:

  • A high quality hospital that has a good success rate for the reason you're going there.
  • The quality of the staff
  • Low infection rates. Aside from making your stay miserable, or extending it, infections contracted in hospitals are the fourth largest killer in America. Every year in this country, two million patients' contract infections in hospitals, and an estimated 103,000 die as a result, as many deaths as from AIDS, breast cancer, and auto accidents combined.
  • A hospital that does not fight the kind of wishes you have if you have an end-of-life event.

If there's a choice, decide whether you want to go to a hospital near where you live, or to a larger, urban hospital. Rural hospitals usually have more friendly nursing care, and are easier to visit for friends and family. On the other hand, rural hospitals do not generally have the back-up staff of high quality professionals who've "seen it all," with a depth of doctors trained in other disciplines and high tech testing equipment in case they're needed.

Monitor your care in a hospital to maximize your care and minimize the chance of a harmful medical error. If you can't do the monitoring, have a patient advocate with you as much as possible. This may sound like a lot of work. While hospitals in the US are among the best in the world, over 100,000 people die a year from errors in hospitals. Getting someone else's pill or i.v. may not matter, or it may literally be lethal.

Make your stay in a hospital easier by keeping in mind such things as:

  • Visitors are there for you. If timing is bad, or you need to cut the visit short, say so -- or ask your advocate to say it for you.
  • Keep people from calling and disturbing your rest by a daily posting on a web site or setting up a human phone tree.
  • Make your room more comfortable by bringing in photos and personal items.

When it's time to check out of the hospital, don't leave until you know what to expect, what to watch for, and what to do if what you're watching for occurs.

Always check your hospital bill. A high percentage of hospital bills have errors. If you can't read the bill, go over it with a hospital representative.

For optimum health care, hire a doctor who specializes in the treatment of HIV in addition to the primary care doctor you have to take care of your general health. [Tell me more]

You indicated that you have a primary care doctor but not an HIV specialist. Studies show that people who are HIV+ do much better if their doctor treats a lot of people with HIV. Bring an HIV specialist on board as soon as you can. You have a lot of decisions to make and can use the advice of a specialist.

To learn the five steps to choosing an HIV doctor, see How To Choose A Specialist.

If the reason you don't have a doctor is because you are having difficulty paying for your share of a doctor's services, see our articles on Uninsured and How To Deal With A Financial Crunch.

Choose HIV and other specialists by comparing them to your ideal for each function, not just because of a recommendation. [Tell me more]

HOW TO CHOOSE AN HIV SPECIALIST

There are five steps to take when choosing an HIV doctor. The steps are similar to the ones to use when researching an automobile -- but will probably take less time. Its time well spent considering the importance to your health.

Step 1: Set criteria that work for you.

In addition to your own criteria, common wisdom is that you'll have the best outcome if your doctor:

  • Is board certified (certification that a doctor has education and experience in a particular specialty.)
  • Has treated a lot of people with HIV.
  • Has a good success rate.
  • Works with a high quality hospital that has a lot of success with people with HIV.

Step 2: Search for doctors that most closely fit your criteria.

Your primary care doctor can be an excellent source for suggestions of HIV specialists. You can also look at the list of doctors who contract with your health plan. If you don't find what you need in the most recent lists you've been sent, check your insurer's web site to see if there have been additional doctors added. Unless you have the money to go outside of your insurer's list ("out of network"), you may have to compromise your criteria.

To learn more about specific doctors, ask your other doctors, friends and people who are also HIV positive. There are also web sites that provide information about doctors (including disciplinary information).

Step 3: Speak with the doctor's office to gain practical information.

When you speak with the office staff you'll be able to learn such things as whether the doctor takes new patients, takes your insurance, the doctor's office hours and how long it takes to get an appointment.

Step 4: Narrow down the doctors by evaluating the information you've compiled.

Step 5: Interview the doctor.

Among other things that may be important to you, be sure that:

  • The doctor feels she can help.
  • You and the doctor are on the same page about the level of your participation in your health care.
  • You are comfortable enough with the doctor that you feel encouraged to tell the doctor everything, including whatever you find embarrassing.
  • The doctor listens to you.
  • The doctor explains what you need to know in a way that you can understand.

Once you have all the factors together, if a decision isn't clear, trust your informed instincts.

HOW TO CHOOSE PRIMARY CARE DOCTORS AND OTHER SPECIALISTS

If you need to choose other specialists, of if you want to evaluate your primary care doctor, apply the same steps as choosing an HIV specialist.

With respect to primary care doctors, the specialty to look for is Internist. Internists basically specialize in adult medicine.

Ideally your primary care doctor will also work with the same hospital as your HIV specialist, but it is not critical. If the doctor doesn't work with that hospital, she won't be able to provide you medical care there.

NOTE: IF YOU WANT TO GO TO A DOCTOR WHO IS NOT IN YOUR INSURER'S NETWORK

Consider negotiating a discount. Studies show that 60% of patients who negotiate get charged less. You can learn reasonable prices for medical services at your insurer's web site or by calling the company. Steeper discounts are usually given for paying cash.

Be aware that it is illegal for your doctors and other health care providers to discriminate against you because of your HIV status [Tell me more]

Doctors and other health care providers cannot refuse to treat you, or treat you differently than other patients thanks to the federal Americans With Disabilities Act (ADA), and similar state laws. It doesn't matter whether the provider or other employees fear getting the virus or transmitting it to other patients.

Thanks to the ADA, doctors and other providers also cannot:

  • Refer you to another doctor as a pretext for discrimination. Referrals have to be based on actual professional judgment.
  • Provide you a service or benefit that is not equal to those provided to others.
  • Provide you a service or benefit that is different or separate from benefits or services provided to others
  • Use eligibility criteria that screen our or tend to screen out people with disabilities (unless the criteria are necessary).

In addition, doctors and other health care providers must accommodate people with disabilities, including HIV disease.

To Learn More

Learn how you can and cannot transmit HIV. Tell all sex partners about your HIV status. [Tell me more]

HIV is transmitted from person to person through sex and through contact with blood.

Learn about the various means of transmission as well as how to live and play safe.

It is your responsibility to inform your sexual partners about your HIV status. It may be difficult to do, but it is ethically the right thing to do. In addition, you can be liable both on a civil and criminal basis for knowingly transmitting HIV to another person.

Take news of medical break troughs with a grain of salt. [Tell me more]

The media has a habit of giving coverage to announcements of medical break throughs well before they have been sufficiently tested. Before relying on any such reports, use the same techniques as when conducting medical research.

For example:

  • Many reports concern break throughs in a test tube that have not yet been tested on human beings.
  • If break through tests involve people, they are usually a small number of people, with tests that involve a short period of time.
  • The companies announcing the news may have a conflict of interest.

Talk with your doctor or other health care provider if you have questions about new medical break throughs or anything else that comes to your attention from family members or friends, or your research.

To Learn More

More Information

Medical Research