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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

      

HIV IN PRISON HANDBOOK: WHAT EVERY CDC PRISONER SHOULD KNOW

November 1999

http://www.prisonlaw.com/HIVmn.htm

 

1. Introduction

This handbook is written for prisoners in the California Department of Corrections, their legal advocates, and their family members. We hope it will be useful not only for those prisoners who are learning to live with HIV, but for other prisoners and legal advocates who want to learn more about HIV. The field of HIV research has advanced rapidly in the past several years and is continuing to progress further. Consequently, the health information in this handbook tends to be more general than specific. Current information on health education and treatment may be obtained by writing to the organizations listed in the Appendix. In addition, the CDC's policies are constantly changing and different prisons have different policies. Therefore, readers should keep a lookout for Administrative Bulletins which announce policy changes. The Prison Law Office plans to periodically update this handbook, so feel free to write to us if you know of a policy or health care development which needs to be included in future versions. We have also compiled an annotated bibliography of cases related to HIV-positive prisoners. Please write to us if you would like a copy.

 

2. What are HIV and AIDS?

AIDS (Acquired Immune Deficiency Syndrome) is a disease caused by the Human Immunodeficiency Virus (HIV), a virus that destroys the immune system of the infected person. People with healthy immune systems are able to defend against the numerous infectious agents living on the skin or in the gastrointestinal tract. Certain blood cells in the body fight off harmful germs and prevent disease. When a person is infected with HIV, the virus slowly breaks down these natural defenses. The virus starts killing off the T-4 cells that fight infection and causes certain other cells to stop working properly. Eventually, the body is no longer able to protect itself against harmful illnesses. These illnesses are called opportunistic infections ("OI's"), because they are taking the opportunity to infect the person whose immune system has been weakened by HIV.

Until recently, experts have defined AIDS as this last stage of HIV infection when someone shows symptoms of an opportunistic infection. A federal governmental agency called the Centers for Disease Control and Prevention now defines someone as having AIDS when his or her T-cell count drops to below 200. No one knows for sure what percentage of HIV-infected people develop AIDS. Experts believe that most, if not all, HIV-infected persons will eventually progress to AIDS.

Having the HIV infection is not the same as having AIDS. The virus can live in someone's body for years before his or her immune system breaks down. Many people feel or look healthy and can lead normal lives for quite some time before they begin to show signs of infection. Yet, it is important to remember that anyone with HIV, even people who look and feel healthy, can pass the virus on to someone else.

 

3. How is HIV transmitted?

Although there are still many unknowns about HIV, we do know how HIV is transmitted (how people catch it) and how it is nottransmitted. It is what you dothat puts you at risk of being infected, not whoyou are. HIV and AIDS affect people of every race, color, sex, sexual orientation, social class and marital status. The virus is spread through a direct exchange of blood, semen, or vaginal fluids between an HIV-infected person and someone else. The virus is spread when an HIV-infected person passes any of these body fluids to another person, most commonly through unprotected sex or sharing dirty (used) needles, either with drugs or tattoos. HIV may also be spread from a mother to her unborn baby, either while the baby is being carried or by exposure to blood during birth. The virus may also spread to a newborn baby through breast feeding.

A person may be exposed to the virus (meaning they come into contact with the bodily fluids of someone who has HIV) and remain uninfected (HIV-negative). However, anytime you engage in an activity where bodily fluids are exchanged with an HIV-positive person, you risk getting HIV. The risk of transmission varies depending on which fluid types are exchanged and into what part of the body they are introduced.

It is not possible to tell if someone has HIV by looking at them. Someone who looks completely healthy may have HIV, so do not assume, for example, that it is safe to have unprotected sex with someone just because they look fine. Also, even if someone tells you that they do not have HIV, it is important to practice safe sex. One reason is that it can take up to six months for someone who has been exposed to the virus to get a positive test result. During these six months a blood test will not show any signs of the virus, but the virus can be transmitted to someone else.

 

4. What does not transmit the AIDS virus?

There is widespread misunderstanding about HIV and AIDS. HIV is not spread through casual contact. The virus is rarely found in saliva or tears, and when it is found the concentration is too small to be infectious. There have been no reported cases of anyone contracting AIDS from coming into contact with an HIV-infected person's saliva or tears.

The virus is not spread by touching, kissing, hugging, sneezing, or coughing. It is not spread by sharing the same prison cell, cigarette, telephone, toilet, or shower stall as an infected person. HIV is not spread in food or on sheets. So, for example, one cannot be infected with HIV simply from sharing a cell with an HIV-positive person. One cannot be infected by using sheets washed by an HIV-positive laundry worker or by eating food prepared by someone with HIV. A guard cannot be infected by escorting an HIV-positive prisoner.

An infected mother will not infect her child by taking care of him or her, but can infect her child by breast feeding. There are ways to reduce the risk of passing the virus through breast milk. Because of the many advantages to the baby from breast feeding, mothers with HIV should talk to a health care provider when making the decision whether or not to breast feed.

 

5. How can I protect myself from becoming infected?

The only way to eliminate the risk of becoming infected with HIV is to not do any of the things which are known to permit transmission of the virus. However, there are several ways you can reduce the risk of contracting the virus. You should take the same precautions to prevent transmission even if you have already tested positive for HIV. For example, you should not assume that you do not have to have protected sex simply because you are HIV positive and are having sex with someone who is also HIV positive. This is because it is possible to become re-infected with HIV, which can increase the amount of virus in your body, and can increase the number of different strains of the virus in your body. Also, even if you have tested positive for HIV, you need to prevent transmission of other sexually transmitted viruses, such as Herpes Simplex Virus, Hepatitis A, B, and C, Epstein Barr Virus and Cytomegalovirus, and diseases such as Syphilis. There are no cures for these diseases, and being infected with them will make you ill much sooner.

A. Prevention of Sexual Transmission

Keep in mind that the virus can be passed man to man, man to woman, woman to man, and woman to woman during vaginal and anal sex using a penis, fingers, fist, or a shared object, and during oral sex.

If you are having sex (including oral sex) with a man, have him use a latex condom which contains Nonoxynol-9 (a lubricant that kills sperm) with the condom. Do not use oil-based products like petroleum jelly, baby oil, and hand lotion as a lubricant because they will weaken the latex, making a condom ineffective as protection against HIV.

If you are having sex with a woman, be aware that HIV has been found in vaginal secretions, in menstrual blood, and in discharge from yeast infections. This means you or your partner should use rubber gloves for hand-genital sex, because one's fingers may have small cuts. In addition, use a barrier method like a dental dam for oral sex. A dental dam is a square piece of latex that you use to cover the vagina during oral sex. You can make your own dental dam by cutting open a condom.

B. Prevention of Transmission through Needle Sharing

If you shoot drugs, make every effort to stop. Obviously this is easier said than done, so what follows is information about how to reduce the risk of transmission through needle sharing. HIV can be spread through sharing dirty needles, so do not share your dirty works (needles and other drug paraphernalia like cookers). The blood of the HIV positive person contains the virus. Blood remains on the needle after injection and can be spread to the next person when they use that same needle for injection. If you do share you must clean the needle with bleach after each person uses the needle.

First pour the bleach into a glass. Fill the syringe with bleach. Empty the bleach from the syringe. Repeat this four times. Then fill a glass with clean water. Fill the syringe with water. Then empty the water from the syringe. Repeat this procedure four times. Hot water alone will not kill the virus; you must use bleach or alcohol.

Do not share toothbrushes, razors, and instruments used for ear-piercing or marking the skin with a tattoo. These personal items could be contaminated with infected blood.

 

6. What are the symptoms of HIV infection?

It is important to know that HIV infections symptoms are the same as the symptoms of many other diseases, and none of them is specific for HIV or AIDS. Also, how long the symptoms last and how often they occur are very important in determing whether the symptoms are AIDS-related. Some people will experience symptoms when they first become HIV-positive. Those symptoms may include swollen lymph glands, diarrhea, night sweats, being tired every day, unexpected weight loss, fevers and rashes, persistent white spots or unusual blemishes in the mouth, persistent dry cough with shortness of breath, and pink, purple or brown blotches or bumps on the skin, inside the mouth, nose, eyelids and rectum. Many people will, however, experience no symptoms at all when they are first infected. Some of the symtoms are similar to severe flu-like symptoms, which is because the flu and HIV are both viruses and the symptoms are the body's natural response to the presence of a virus.

After the initial onset of symptoms, many people have an extended period during which they are relatively asymptomatic (they feel healthy).

In addition to the symptoms noted above, these are some signs that women may have when they first become infected:

  • Diseases from having sex, like herpes and pelvic inflammatory disease ("PID");
  • Vaginal infections (such as a yeast infection) that won't go away even after taking medicine for it;
  • Open sores or bumps on the genitals (in or outside the vagina or anus);
  • Stomach pain not during a menstrual period;
  • An abnormal Pap smear.

The Centers for Disease Control and Prevention has defined which illnesses and opportunistic infections determine an AIDS diagnosis. These definitions are based primarily on medical research conducted on white men who have AIDS or who are HIV-positive. Many chronic and severe gynecological problems are known to commonly occur in women with HIV but are not included in the Centers for Disease Control's definition. Consequently, women are often not diagnosed in the early stages of the disease when treatment is more effective.

HIV disease progresses differently in each person infected with the virus. A person may be diagnosed with AIDS when he or she develops any one of a number of opportunistic infections, or develops "wasting syndrome," which is unexplained weight loss of ten percent or more. The most common opportunistic infections are pneumocystis carinii pneumonia (PCP) and Kaposi's Sarcoma (KS). If you suffer from any of these illnesses, it does not necessarily mean that you have AIDS, but you should see a doctor at the prison or jail clinic as soon as possible. HIV weakens your immune system, but it is the opportunistic infections that actually lead to death.

The Centers for Disease Control and Prevention has divided the medical definition of HIV disease into four categories - Group I: Acute Infection, Group II: Asymptomatic HIV Infection, Group III: Persistent Generalized Lymphodenopathy, Group IV, Other HIV Disease.

According to California prison regulations, people in Group IV can only be housed at institutions where continuing hospital care is available.

 

7. What kind of treatment is there?

There is presently no known cure for AIDS. However, there are many new HIV medications available that allow some people with HIV to live long healthy lives. If your tests show that you are infected with HIV, request that the doctor at the jail or prison order a more thorough test of your immune system, including a CD4 (T-cell) count and a measure of your viral load (the amount of HIV in your body). There is evidence that early treatment with HIV medications can keep you symptom-free longer and delay the onset of AIDS. These tests should be done every six months in order to follow the progress of the virus in order to develop appropriate medical treatment and to assess whether the treatment is effective.

Many HIV-positive people have lived for a long time before becoming seriously ill with an AIDS-related infection. It is important to take care of yourself, as difficult as that task can be within the walls of a prison or jail. The organizations at the end of this manual can provide you with information and free subscriptions to newsletters that will help you make a decision about HIV treatment and how to stay healthy.

Antiretroviral therapy is a name for treatment with drugs that help prevent HIV from reproducing and infecting cells in the body. This type of treatment is effective in slowing the progression of HIV disease in many people. Three general types of antiretroviral drugs are currently available:

Nucleoside reverse transcriptase inhibitors (NRTIs) - this group includes zidovudine (AZT, ZDV, Retrovir); didanosine (ddI, Videx); zalcitabine (ddC, Hivid); stavudine (d4T, Zerit); and lamivudine (3TC, Epivir).

Non-nucleoside reverse transcriptase inhibitors (NNRTIs)- this group includes nevirapine (Viramune) and delavirdine (Rescriptor).

Protease inhibitors - this group includes saquinavir (Invirase, Fortovase), ritonavir (Norvir), indinavir (Crixivan), and nelfinavir (Viracept).

At this writing the most common treatment is triple combination therapy, which is a combination of three antiretrovirals, including at least one protease inhibitor. Recent studies show that most people respond well to the triple therapy, meaning that their viral load reaches and sustains an undetectable level. People do experience drug failure (the drugs do not have any effect on the viral load or T-cell count). This is usually because they had taken another drug, such as AZT, before beginning the triple therapy, or because they develop a resistance from not following the medication instructions.

It is extremely important to take the medications according to the instructions. It is important to keep the protease inhibitors at the same level in your body. Taking a "drug holiday" (not taking the medication for several days or more) or skipping doses can be very dangerous. Missing one or more doses can allow the virus to become resistant, meaning that the virus changes its form in order to avoid the effects of the medication.

Sometimes the instructions require that one medication should be taken in the morning and at bedtime. Sometimes you must take a medication with a meal or either before or after a meal. This is often very difficult to do within the structure of the prison. One of the most common complaints among HIV-positive prisoners is that they want to take their medications as instructed but are unable to do so either because their prescriptions are not refilled on time, or because their daily schedule does not coincide with their medication schedule.

Side effects is another issue to be aware of when taking HIV medications. People react to medications in different ways. Some people will have mild effects or no symptoms at all, while other may have many side effects or severe symptoms. Some of the more common side effects are listed below. Keep in mind that you may not suffer any of these side effects, and even if you it may only be temporary. Also, you should know that many of these side effects are also symptoms of HIV, and you should talk to a doctor or nurse when deciding whether to start taking HIV medications. The following is a list of possible side effects:

    
  • Kidney/bladder problems
  • Nausea/vomiting
  • Diarrhea (loose bowel movements)
  • Numbness/tingling sensations (especially the fingers/hands, toes/feet and around the mouth)
  • Skin Problems (rash or dry, itchy skin)
  • Fatigue
  • Mouth Problems (mouth ulcers or sores, infections with dark red or white patches)
  • Abdominal Pain (stomach aches)
  • Headaches
  • Taste Changes

 

8. How do I know if I have been infected with HIV?

The only way to know if you have been infected with HIV is to take a blood test called the HIV antibody test. When someone is infected with HIV their body develops antibodies which are found in the blood. Antibodies are proteins that the body forms to fight off diseases when they enter the bloodstream. But HIV antibodies cannot protect your body from HIV because HIV changes and reproduces too fast for the antibodies to catch up.

A. What does a positive test result mean?

A positive test result means that you have been infected with HIV. This means that you are "HIV-positive" (HIV+) or "HIV-infected." An HIV-positive result does not necessarily mean you currently have AIDS, and does not predict whether you will go on to develop symptoms of AIDS, but you are capable of spreading it to others. If you test positive you should seek medical treatment as soon as possible.

B. What does a negative test result mean?

A negative test result means that no HIV antibodies were found in your blood. Because there is a delay of up to six months between the point of exposure and when antibodies are detected, a negative test does not necessarily mean that you have not been exposed to HIV. If you have had unprotected sex or shared needles during the past six months you should get tested again in three to six months. Even if you get a negative result, if you have already been exposed to HIV you are capable of infecting others.

9. Should I be tested?

There are many factors to consider when deciding whether to be tested for HIV. Because of the many challenges facing people with HIV who are incarcerated, whether or not to be tested is a different question for someone in prison that for someone outside.

One factor to consider is how long you will be in prison. If you will not be in for a very long time you might want to consider waiting until after your release. There are many outside services available to HIV-positive people. And if you wait to be tested you will not risk facing discrimination as an HIV-positive prisoner. However, if you are HIV-positive you can start planning for your treatment and learning about resources.

One reason to be tested is that the sooner you know the sooner you can plan what to do. Generally, early treatment of HIV infection can keep you healthy for a longer time, although there is also no guarantee that you will get the treatment you need while incarcerated. There are now medications which are not cures to HIV or AIDS, but are effective in slowing down the progress of the virus. The sooner that an HIV-positive person starts taking these medications the more chance there is of affecting the growth of the virus.

On the other hand, there are some reasons why you might not want to be tested while in prison. One reason not to be tested is that if you get a positive test result your HIV status may not be kept confidential. The law requires that everything about the testing procedure and the results be handled confidentially. In other words, only the prisoner and medical staff are supposed to know that the prisoner is being tested and what the results are. Prison officials claim that the testing is kept confidential, but some prisoners who decide to be tested often find that other prisoners and guards find out about their HIV status. Sometimes people assume that someone who has an HIV antibody test is HIV-positive. Unfortunately there are many misconceptions about HIV and people with HIV. As discussed above, HIV cannot be transmitted through casual contact, but many people believe that it can. As a result HIV-positive prisoners may be discriminated against.

You should also be aware that once you have a positive test result you may be transferred to one of the prisons designated to house HIV-positive prisoners.

California does not have a mandatory testing policy for all prisoners. It is possible, however, that the California Department of Corrections will require all prisoners to be tested at some point in the future. Currently there are over 1,500 prisoners in the California prison system who have tested positive for HIV. Prison medical staff estimate that between 5,000 and 8,000 prisoners (about 3% to 5% of the total prisoner population) could carry the virus. This estimate is based on the prevalence of HIV in the general population. (Marcus Nieto, California Research Bureau, "Health Care in California State Prisons," Prepared at the Request of Senator Richard Polanco, Chairman, Joint Committee on Prison Construction and Operations (June 1998).) Some prisoner advocates estimate that there are least 15,000 HIV-positive prisoners in California, most of whom have either not revealed their HIV status to the prison or do not themselves know that they are HIV-positive.

 

10. How do I go about getting tested?

You should contact the medical clinic at your institution, which should order a confidential test for you. The medical staff uses only new, sterile needles for drawing the blood, so you will not get AIDS by taking the test. If you choose to be tested, you may have to pay for your test. However, if you are a California state prisoner, the prison cannot charge you money for an involuntary test (see below for information on involuntary testing). Under California Penal Code section 7514, the prison system must pay the testing expenses, unless the test is voluntary and not specifically approved by the Chief Medical Officer (CMO). If you have any problems, you should contact your local legal aid office or one of the specialized legal offices that focuses on helping people with AIDS (see attached Resource list).

If you are tested, you should ask for information both before and after the test about what the results mean. Administrative Bulletin 91/8 states that the CMO or a staff member trained in HIV testing must provide counseling to prisoners before and after they are tested for HIV. Additional counseling is required if requested by the prisoner. The HIV counseling must follow guidelines laid out in the "Pre- and Post-Test Counseling for Inmates Undergoing HIV Antibody Testing," Office of Health Care Services, December 1990. Despite these guidelines, prisoners have reported that no pre- or post-counseling has been made available. If this happens to you, you might want to file a 602 and contact outside agencies, such as Project Inform (see Resource list). If you have someone on the outside who is helping you, they could call the AIDS Hotline for more information. The AIDS Hotline number is: 1-800-342-AIDS. Hours: 9am - 9pm weekdays, 11am - 5pm weekends. This is a toll-free call.

People who continue high-risk behavior, such as sharing needles or having unprotected sex, should consider being tested regularly. Of course, it is best to stop these dangerous practices to lower your risk of infection and the risk of infecting others.

 

11. What if I am pregnant and want to be tested?

If you are pregnant, you can still take the test. If you are infected and decide to continue with your pregnancy, your infant will probably test HIV-positive for several months after birth because of the antibodies in your blood. The chances that an infant who tests HIV-positive will remain HIV-positive and develop AIDS are less than 50%, but the child should be repeatedly tested to confirm the status of his or her health.

12. Can prisons and jails force me to be tested?

California law does not require mandatory testing for all prisoners. However, incarcerated persons may be required to be tested under the following circumstances:

Prostitution Conviction - Penal Code § 1202.6

California requires that individuals convicted of soliciting or engaging in prostitution be tested. Cal. Penal Code § 1202.6.

Symptoms of AIDS - Penal Code § 7512.5

The Chief Medical Officer (CMO) of a California state prison may order you to take an HIV test if he or she concludes that you have shown clinical symptoms of AIDS or AIDS-related complex as recognized by the Centers for Disease Control. Cal. Penal Code § 7512.5; Cal. Welfare and Institutions Code § 1768.9. A prisoner may not appeal this decision. Cal. Penal Code § 7512.5.

Law Enforcement Employee Exposed - Penal Code § 7510, 7511

A law enforcement employee who believes that he or she came into contact with bodily fluids of a prisoner must report the incident. Cal. Penal Code § 7510. The employee must first file an incident report with the State Department of Health Services within two days of the incident (this time period may be waived by the CMO). The Chief Medical Officer may, within five days, order an HIV test of the prisoner if he or she finds that "there is a significant risk that HIV was transmitted." See Cal. Penal Code § 7511 for factors the CMO shall consider in making this decision.

Observation of High Risk Behavior - Penal Code § 7516

A custodial officer or staff person may file a written report when he or she observes or is informed of a prisoner engaging in an activity which could result in the transmission of HIV. Reportable activities include, but are not limited to: (1) sexual activity resulting in exchange of bodily fluids; (2) IV drug use (using a needle or syringe to inject drugs); (3) incidents involving injury to inmates or staff in which bodily fluids are exchanged; (4) tampering with medical and food supplies or medical or food equipment; and (5) tattooing among prisoners. Cal. Penal Code § 7516(b). The CMO may investigate the report and if he or she concludes that "the situation reported caused the probable exchange of body fluids in a manner that could result in the transmission of HIV," he or she shall require that the prisoner be tested. Cal. Penal Code § 7516(5)(c). This order is appealable (see below).

Although there are no documented cases of HIV transmission through biting or spitting, HIV-positive prisoners in other states have been charged with or threatened with prosecution for criminal assault and attempted murder for biting prison guards.

Request by Another Prisoner - Penal Code § 7512

One prisoner may request that another prisoner be tested for HIV if he or she has reason to believe that he or she came into contact with the bodily fluids of that prisoner. Situations where this might occur include, but are not limited to, rape or sexual contact with a potentially infected inmate, tattoo or drug needle sharing, an incident involving injury in which bodily fluids are exchanged, or confinement with a cellmate under circumstances involving possible mingling of bodily fluids. Cal. Penal Code. § 7512.

 

13. How do I appeal an order to be tested for HIV?

Within five days of receiving a report or request, the Chief Medical Officer must issue a written decision stating his or her reasons for requiring or not requiring the prisoner to undergo HIV testing. The CMO cannot order a prisoner to be tested unless "considering all of the facts and circumstances there is a significant risk that HIV was transmitted." Cal. Penal Code § 7511.

Prisoners who have been ordered to submit to testing under California Penal Code sections 7511, 7512, and 7516 have the right to appeal the decision to a three-member panel and have a closed hearing on the matter. Cal. Penal Code § 7515. The appeal must be filed within three calendar days of receipt of the CMO's decision.

The people who sit on this panel are: (a) the CMO who made the original decision; (b) a physician or surgeon who has knowledge of HIV and is selected by the CDC; and (c) a physician or surgeon who has knowledge of HIV and AIDS, who is selected by the State Department of Health Services, and who is not under contract or on the staff of the prison. Cal. Penal Code §7515(b). The panel decision may be appealed to the Superior Court by the prisoner if the decision requires testing or by the reporting correctional officer if the decision does not require testing. Cal. Penal Code § 7516.5.

Prisoners have argued that mandatory testing is unconstitutional on a number of grounds, including the Fourth Amendment prohibition against unreasonable search and seizure, the First Amendment right to privacy, the due process clause of the Fifth and Fourteenth Amendments, the First Amendment right to free exercise of religion, and the Eighth Amendment prohibition against cruel and unusual punishment. These approaches have not been successful for the most part because courts have consistently deferred to the policy decisions of prison officials with respect to this issue. See, e.g., Walker v. Summer, 8 F.3d 33 (9th Cir. 1993).

    

 

14. How reliable are the test results?

A negative test result is no guarantee that you are not infected with the HIV virus. In other words, you may test HIV-negative and still be infected and therefore capable of passing the virus to others even if you test HIV-negative. The antibodies that develop in reaction to the HIV virus usually take six to twelve weeks to become detectable, but may take up to six months. In other words, there is a lag time between when a person is infected and when he or she would test positive.

You should also be aware that due to testing procedures it is possible, although extremely rare, for you to get a false positive (meaning your test comes back HIV-positive but you actually do not have the disease). It is a good idea to get a second test to confirm an HIV diagnosis.

 

15. Who will be informed about my positive test result?

California prison officials claim that the testing procedure and notification of results are handled in a confidential manner. Unfortunately, information does sometimes circulate by unnecessary disclosure to the staff, administrators, and other prisoners. Many prisoners say that they are afraid to take the test because prisoners with HIV or AIDS are subjected to discriminatory treatment and harassment.

California law requires that prisoners who have AIDS or HIV infection be identified to all employees and medical personnel at a prison or county jail who have or may have contact with them. Cal. Health and Safety Code § 199.99(c). Health and Safety section 199.99(e) provides that any unauthorized disclosure of a prisoner's HIV status constitutes a misdemeanor.

When you are released from a state correctional institution, your parole officer is notified if you have tested HIV-positive or if you have been diagnosed as having AIDS. Cal. Penal Code § 7520. Your parole or probation officer is responsible for seeing that, either through your own physician or through the county health department, you are made aware of AIDS counseling and treatment available in your area. Parolees who test positive and do not notify their spouses of their diagnosis should be aware that California law permits the institution to instruct either the prisoner's own doctor or the CMO to disclose this information to the spouse. Cal. Penal Code § 7521(a).

 

16. If I have tested as HIV-positive, will I be placed in a separate prison housing unit?

In December 1991, the California Department of Corrections began implementing a housing policy under which all prisoners known to be infected with HIV would be housed in either "designated general population housing" or "closed units" (see Administrative Bulletin 91/29, "Housing Policy for Identified HIV-Infected Inmates," October 22, 1991). The CDC defines designated general population housing as "specified housing area(s) located within the overall general population housing of an institution which will house regular general population inmates and/or HIV-infected inmates." In practice, HIV-positive prisoners are usually housed in a separate housing unit from HIV-negative prisoners, but are able to eat with the rest of the general population and to participate in general population programs. Prisoners who officials believe have engaged in high-risk behavior are placed in closed units where they remain segregated from the general population at all times.

Most male prisoners who are known to have HIV or AIDS are housed at the California Medical Facility at Vacaville, California State Prison at Corcoran, California Men's Colony in San Luis Obispo, and California Institution for Men in Chino. There is currently a plan to move many of the HIV-positive prisoners at Corcoran who are not in the SHU to New Folsom (California State Prison - Sacramento). It is unclear when this will happen, but the Office of Health Care Services has said it will likely be after January 1, 2000. Because New Folsom is not a wheelchair-accessible prison, those HIV-positive prisoners who use wheelchairs might not be transferred to New Folsom. Female prisoners with HIV and AIDS are usually housed at the Correctional Institution for Women in Frontera or Central California Women's Facility.

Prison officials commonly justify their policies segregating HIV-positive prisoners on the grounds that segregation helps prevent HIV transmission, helps prevent violence against HIV- positive prisoners, and assists prison medical staff to provide medical care for those prisoners who have HIV-related illnesses.

 

17. Are there advantages to having HIV and AIDS prisoners separated from other prisoners?

Segregation has not always ensured that prisoners with HIV and AIDS receive better medical care. Some prisoners have reported that their medical care has gotten worse since they tested HIV-positive and were transferred to an HIV-designated facility, such as Corcoran. Others, including many prisoners at CMF, feel their medical care has improved.

The fear of being placed in an AIDS unit and being stigmatized by this identification discourages many prisoners from volunteering to be tested. Residents of these units are sometimes subject to harassment and discrimination because of their medical status. Since HIV is transmitted only through person-to-person exchange of blood, semen, or vaginal secretions, and not through casual contact, we believe that it is not necessary to quarantine all people who test HIV-positive for the protection of people who are HIV-negative.

Some HIV-positive prisoners prefer to be housed separately. This is so that they are not in close contact or cellmates with HIV-negative prisoners who might treat them negatively because of their HIV status. Some HIV-positive prefer to keep their HIV status a secret when they are housed in the general population. However, if they are on the triple combination therapy this can be very difficult (see discussion, above, on HIV treatment). The difficulty of keeping one's status secret can be very stressful. Because having stress makes it harder for the body to fight infection people with HIV should avoid stress as much as possible. For some people this is a factor in favor of segregated housing.

 

18. Do prison officials have the power to exclude HIV-positive prisoners from different programs and services available at the prison?

Federal and state courts have generally upheld the right of prison officials to deny prisoners access to certain programs and privileges, when the policy is based on legitimate medical, safety, and institutional security concerns. In California, HIV-positive prisoners are generally allowed to participate in most prison programs. One exception is that HIV-positive prisoners have at times not been allowed to have food service jobs at the California Medical Facility at Vacaville. Gates v. Rowland, 39 F.3d 1439 (9th Cir. 1994).

HIV-positive prisoners are allowed to have contact visits with their parents, spouses, siblings, and children. HIV-positive prisoners can also have overnight visitation with all relatives listed above, except spouses, once the visitors are approved. Minor children must be accompanied by an adult. An infected prisoner who applies for such an overnight visit must sign an authorization to disclose their HIV status to the accompanying adult, the parent, or legal guardian of the child, and the child(ren) who may participate in the visit. Officials contend that public health considerations justify prohibiting prisoners with HIV from having overnight visits with their spouses.

One HIV-positive prisoner won the right to have a family visit with his wife. He charged that the CDC had denied him the right to participate in the family visiting program due to his disability (HIV-positive status), in violation of the Americans with Disabilities Act, 42 U.S.C.§ 12132, and Section 504 of the Rehabilitation Act of 1973. As a result of the lawsuit the prisoner and the CDC entered into a settlement agreement which allowed the HIV-positive prisoner to have conjugal visits with his wife, but did not affect the general rule, meaning that other HIV-positive prisoners are still not allowed to have conjugal visits.

According to Administrative Bulletin 91/28, qualified prisoners with HIV may not be excluded from work furlough facilities based solely on their HIV status. Prisoners who require only routine medical monitoring and are within 120 days of parole may participate in work furlough. However, where prisoners have been denied access to an employment training program or other programs, courts have generally ruled in favor of the correctional system, citing institutional safety.

 

19. Do prisoners have the right to receive medical treatment for HIV/AIDS?

The CDC provides HIV medications, including protease inhibitors, to most HIV-positive prisoners who have symptoms related to HIV and/or have a low T-cell count or high viral load.

Prisoners do have the right to refuse HIV medications. Some HIV-positive prisoners have refused medications because they want to avoid the side effects, which can be very unpleasant. Many feel that the medical staff does not take their complaints of side effects seriously. Another concern is that medication treatment will be interrupted when they are transferred from one facility to another, or when other administrative decisions and delays in getting medication renewals interrupt treatment. This is a valid concern, because if you begin taking an HIV medication and then stops taking it, that medication and certain other medications may no longer work for you. Prisoners report problems with regular availability of HIV medications and the lack of monitoring for side effects by medical staff.

Under Cal. Penal Code section 3502.5 prison physicians can prescribe to HIV-positive prisoners and prisoners with AIDS an "investigational new drug" if the doctor thinks access to that drug is in "the best medical interest of the patient, and the patient has given informed consent."

Prison officials cannot absolutely refuse to provide necessary medical care to prisoners. Such "[d]eliberate indifference to [a prisoner's] serious medical need" would amount to cruel and unusual punishment under the Eighth Amendment. Estelle v. Gamble, 429 U.S. 97 (1976). The finding of a constitutional violation turns on whether the prisoner was the victim of deliberate indifference. It is often difficult for prisoners to prove that the prison administration's delay or interference in responding to their medical needs meets the "deliberate indifference" standard. Deliberate indifference basically means knowing that the prisoner faces a substantial risk of serious harm and disregarding that risk.

Provision of Medical Care - Title 15

Below is a summary of Title 15 of the California Code of Regulations sections 3350 to 3359, which describes prisoners' rights to medical and dental care. You should have been given the full text of Title 15 when you came to prison. It can also be found in the California Code of Regulations in your law library. Each section below also includes our comments and suggestions about the regulations.

Title 15 states that the CDC shall only provide inmates medical services which are medically necessary, and treatment which the CDC's studies have shown to be effective. Cal. Code of Regs., tit.15, section 3350. The treating physician will decide if a treatment is effective. "Medically necessary" means health care services that are determined by the attending physician to be reasonable and necessary to protect life, prevent significant illness or disability, or alleviate severe pain.Cal. Code of Regs., tit.15, section 3350(b)(1). "Severe pain"means a degree of discomfort that significantly disables the patient from reasonable independent function. "Significant illness and disability" means any medical condition that causes, or may cause if left untreated, a severe limitation of function or ability to perform the daily activities of life or that may cause premature death.

Filing 602s

Prisoners who believe that they are not receiving adequate medical care should file a 602. When filing a 602 regarding medical care, it is important for prisoners to keep in mind the above limitations on the medical conditions that the CDC will treat. For example, simply writing in a 602 that you want pain medication for severe pain is unlikely to succeed. However, if your pain is so severe that you cannot sleep, walk, attend programs, or eat, you should write that in your 602, since that information might be more likely to convince the CDC that pain medication is medically necessary.

Sick Call - § 3354(e)

Each facility is required to provide scheduled times and locations for general population inmates for sick call. A medical doctor, registered nurse, or medical technical assistant (MTA) shall make daily visits to each nongeneral population housing unit to provide medical attention to inmates unable to use the sick call services provided for general population. Staff conducting sick call screen medical problems and requests for medical appointments to determine if further medical attention is required. A facility physician shall visit each specialized housing unit at least once each week.

Some prisoners have reported that they have been sick in their cells for days without ever seeing an MTA or for weeks without seeing a doctor. This is a violation of section 3354(e) and prisoners should file a 602 if this happens.

Right to Refuse Treatment - §3351

Unless you have been determined to be mentally incompetent, the prison cannot force you to take medication or to receive medical treatment. They can, however, do this if you have tuberculosis or if there is a medical emergency.

You may want to prepare a "Durable Power of Attorney for Health Care." A Power of Attorney is a document in which you can give permission to someone you trust, such as a family member, to make health care decisions for you if you are unable to make them for yourself, such as in an emergency or if you are unable to speak. On the Power of Attorney form, you can write your desires regarding life-prolonging treatment. For example, some people prefer that extreme measures such as surgery not be taken to save their lives in an emergency or do not want to live attached to life support machines.

The CDC's Treatment Guidelines for Medical Care of HIV-positive prisoners

In addition to the guidelines for medical care in Title 15, there are general CDC guidelines for the treatment of HIV-positive prisoners. The Health Care Services Division of the CDC issued a memo to all Chief Medical Officers, Health Care Managers and Public Health Designees on June 15, 1999, with the "Guidelines for the Use of Antiretroviral Agents in HIV-Infected Adults and Adolescents," (May 5, 1999). The memo simply states that the Guidelines "are valuable references for patient care."

The Guidelines were developed by a panel that is part of the U.S. Department of Health and Human Services. It provides recommendations for antiretroviral therapy, including when to start treatment, what drugs to initiate, when to change therapy, and therapeutic options when changing therapy. The Guidelines recommend that treatment be offered to individuals with fewer than 500 CD4 T cells or with a viral load greater than 10,000 (bDNA assay) or 20,000 (RT-PCR assay) (ask your doctor which assay is used). If the person does not have any symptoms of HIV, the doctor and patient must weigh the risks and benefits of beginning treatment. The most recent studies have shown that the most effective way of reducing the amount of HIV in a person's body is:

  • A potent protease inhibitor (such as Crixivan, Norvir, Saquinavir, or Viracept) plus two nucleoside analogue reverse transcriptase inhibitors (NRTIs such as AZT, ddI, ddC, drT, 3TC, and ABC), or
  • Efavirenz (a non-nucleoside reverse transcriptase inhibitor - NNRTI) two NRTIs, or
  • Saquinivir plus ritonavir plus 1 or 2 NRTIs.

HIV RNA levels (viral load) are expected to decrease 10-fold at eight weeks and become undetectable (less than 500) at 4-6 months after you begin taking the medication. If the viral load is greater than 500 at 4-6 months, it means the therapy has failed. At least two of the medications used should be switched. However, it can be very difficult to find another medication that works when one treatment combination has failed.

If you know somebody on the outside who has Internet access, you can get a copy of the Guidelines by printing them out from the HIV/AIDS Treatment Information Service website at http://www.hivatis.org

 

20. What rights do prisoners have to receive HIV education and counseling?

Under California Penal Code section 5008.1, the California Director of Corrections is supposed to provide all California state prisoners with information about how to avoid contracting the HIV virus. The Director of Corrections must provide all prisoners who are within one month of release or being placed on parole with information about agencies and facilities that provide testing, counseling, medical, and support services.

Despite these laws that provide for AIDS counseling and education in California's state prisons and county jails, many prisoners with AIDS do not receive pre-release planning or follow-up care. Some of the AIDS support groups on the outside have been listed in the back of this booklet. You are encouraged to contact them for help and support.

 

21. Can I be released from prison early because I have AIDS?

There are two different provisions under California law for the early release of terminally ill prisoners. The first is commonly known as compassionate release. Under Penal Code section 1170(d), the trial court judge can recall the original sentence and impose a lesser one. The court can do this on its own motion if done within 120 days of the date of commitment, and can do it at any time if recommended by the Director of Corrections or the Board of Prison Terms. If the director or the board make a positive recommendation to the trial court the court is required to hold a hearing within ten days to consider whether the prisoner's sentence should in fact be reduced or recalled. This provision does not apply to prisoners serving a sentence of death or of life without the possibility of parole. In order to recall a prisoner's sentence, the court must find both that the prisoner is "terminally ill with an incurable condition caused by an illness or disease that would produce death within six months, as determined by a physician employed by the department," AND that "the conditions under which the prisoner would be released or receive treatment do not pose a threat to public safety." Cal. Penal Code § 1170(c)(2).

The prisoner or someone acting on his or her behalf may make a request to the CMO at the prison or to the Director of Corrections to be considered for a reduced or recalled sentence based on terminal illness. For prisoners with determinate sentences the Director of Corrections shall makes a recommendation to the court within 30 days of the request.

Executive clemency, the second provision under California law permitting the early release of terminally ill prisoners, is granted by the governor, but has so far not been granted to any prisoner with AIDS in California. "[The State Governor's office] does not consider applications of executive clemency for individuals currently under sentence except on grounds of either extreme and unusual hardship or innocence. And usually only upon the recommendations of the Board of Prison Terms, the District Attorney and the sentencing judge." (Letter from Patricia C. Esgro, Deputy Legal Affairs Secretary Office, State of California to Carrie Kojimoto (May 23, 1991).)

Individuals requesting clemency based on extreme hardship must document unusual and compelling justification, such as a serious medical condition arising after sentencing. In addition, all available judicial remedies must first be exhausted before consideration by the Governor's Office. Prisoners or their attorneys should contact the Governor's Office to request executive clemency. Once a request has been made, the commutation review process begins, with a background investigation by the Board of Prison Terms, followed by a detailed review by the Governor's Office.

 

22. How do I complain when the prison has violated my rights?

Prisoners who feel their rights are being violated should immediately file an administrative appeal. This is a written complaint you prepare on an Inmate/Parolee Appeal Form known as a "CDC 602." Follow the instructions in small print carefully. Part A of the form asks you to describe your problem. Briefly state your problem and describe relevant events in chronological order. Part B of the form instructs you to identify what solution you are seeking. Attach any supporting documents. Keep a copy of the appeal and a record of when you submitted it.

Another form, the CDC 1824 - Reasonable Accommodation or Modification Request - is specifically for disability issues. HIV is considered a disability under the Americans with Disabilities Act, (ADA) a federal statute that bans discrimination against people with disabilities. If you feel you are being discriminated against because of your HIV status (for example, you are being denied work, access to the law library, etc.) you should file a Reasonable Modification or Accommodation Request form, which is commonly referred to as an 1824 form. This form can also be used for discrimination based on other types of disabilities, such as if you are unable to walk, or have a hearing or vision impairment. The form is used to ask that the CDC make a reasonable modification to a policy or decision so that you can participate in programs and services that other non-disabled prisoners benefit from.

The Prison Law Office brought a class action lawsuit against the CDC under the ADA. The case is called Armstrong v. Davis (formerly known as Armstrong v. Wilson) and the plaintiffs includes prisoners and parolees with mobility (walking), hearing, vision, learning, and kidney impairments. If you have one of these impairments, you are automatically covered by the Armstrong order. Even if you are HIV-positive you are not covered unless you also have one of these impairments. In 1996, the Prison Law Office won a settlement in which the CDC was found to be violating the ADA. A copy of the Remedial Plan, a document which spells out what the CDC has to do for disabled prisoners and parolees, should be in your law library.

The Armstrong lawsuit covers only discriminationon the basis of a disability, and does not address medical problems such as the need for physical therapy or the need for a hearing aid. Examples of problems which are covered include not being able to go the yard because there is no ramp for your wheelchair, or not being able to understand the announcements on the P.A. system because you have a hearing impairment. CDC's failure to provide you with a specific type of medical care or medical appliance is not necessarily covered by Armstrong.

If you are having structural access problems (for example, you can't get into a program area because you use a wheelchair) or programming problems (for example, you can't participate in school because there is no sign language interpreter) or other discrimination on the basis of your disability, we can try to help solve these problems. However, you first need to fill out an 1824 form to try to resolve the problem. If your 1824 is denied, you should appeal the decision and send copies of any denials to the Prison Law Office to see if we can help. The Prison Law Office also has an informational packet called, "Your Rights Under the ADA."

You may know a sympathetic doctor or other medical person, or legal advocate on the outside whom you can contact if you feel that you have been mistreated. That person could ask the prison or jail administration about your medical status. You should also consider contacting your local legislator's office for assistance in appealing this conduct.

 

23. Who should I contact if my problems are not being resolved through an administrative appeal?

As stated above, if you believe that your rights have been violated by the CDC you should first file a 602 or an 1824. If you have filed appeals and pursued them to the Director's Level and still are not satisfied you have a few options. Please see the page on requesting state agency investigations of CDC actions.

 

24. Can I file a lawsuit to challenge violation of my rights?

Federal Court

Under federal law, the Civil Rights Act allows a prisoner to sue state officials for violation of federal constitutional or statutory rights. (See 42 U.S.C. § 1983.) These suits are known as "civil rights" or "section 1983" actions and can claim physical injuries or other harm. The prisoner can seek money damages and injunctive relief (a court order for the prison to change its policy or decision). Whether a prison official can be sued for money damages under the federal Civil Rights Act depends on the facts of each individual case. There are a few very important requirements to be aware of when filing civil rights actions.

The statute of limitations (time limit) for filing civil rights lawsuits requires that the lawsuit be filed within one year from the date accures (generally, the date of the event or incident which caused the injury, or the date a person finds out that an injury has been suffered). However, unless a prisoner is imprisoned under a sentence of death or life, the one year time limit is suspended during the imprisonment, for up to two years.

The Prison Litigation Reform Act §§ 803 - 809 imposes significant requirements on litigation brought by individual prisoners. 42 U.S.C. § 1997e. You should read these provisions very carefully. One example is the "exhaustion" requirement. If you have a complaint about prison conditions, including any issue discussed in this manual, the first step is to file an administrative appeal on a 602 or 1824 form, as explained above. If your 602 or 1824 is denied, you must appeal to the next level of review until you complete the Directors Level. This rule is called the "exhaustion of administrative remedies requirement" and applies to claims brought by prisoners for violations of federal law. (42 U.S.C. § 1997(e)(a).) It is very important to keep copies of all grievances you file and their responses. If you do not have these documents, the court may dismiss your complaint because you have failed to show proof of meeting the exhaustion requirement. In addition, many attorneys and advocacy groups will not help you unless you have already unsuccessfully tried to resolve the problem through the grievance process.

Exceptions to the Exhaustion Requirement

The Ninth Circuit recently held that when money damages are not available through the grievance process, the prisoner does not need to exhaust administrative remedies (try to get money from the CDC or BPT) before filing a complaint in court. Rumbles v. Hill, 182 F.3d 1064 (9th Cir.1999) Since the CDC will not award money damages to a prisoner who files an administrative appeal, you are no longer required to file an administrative appeal when you only want money damages (as opposed to wanting an injunction - a court order for the prison to change its policy or decision). Cal. Code Reg. tit. 15 §§ 3084.1, 3084.7. However, the law is constantly changing in this area. To play it safe, you should still file a grievance even if you only want money damages. You should then attach the CDC's denial of that grievance to your court complaint as proof that you have exhausted.

Another requirement to be aware of is the In Forma Pauperis requirement. If you file a federal civil rights lawsuit you will have to pay the court filing fee. Even if you have very little money at the time of the filing the fee will be gradually deducted from your account as you earn money. Filing fees vary depending on the court.

If you think you want to file a federal personal injury lawsuit, please refer to the Personal Injury Manual.

State Court

Prisoners have the right to file writs of habeas corpus in order to challenge conditions of confinement. As with appeals to federal court, prisoners must first exhaust their administrative remedies before filing a habeas writ. If you want more information about filing writs please review the Habeas Corpus Manual.