Can I Get Social Security Disability Benefits for HIV / AIDS?
- How Does the Social Security Administration Decide if I Qualify for Disability Benefits for HIV / AIDS?
- About HIV Infection and Disability
- Winning Social Security Disability Benefits for HIV / AIDS by Meeting a Listing
- Residual Functional Capacity Assessment for HIV / AIDS
- Getting Your Doctor’s Medical Opinion About What You Can Still Do
Winning Social Security Disability Benefits for HIV / AIDS by Meeting a Listing
To determine whether you are disabled at Step 3 of the Sequential Evaluation Process, the Social Security Administration will consider whether your HIV infection is severe enough to meet or equal the HIV listing. The Social Security Administration has developed rules called Listing of Impairments for most common impairments. The listing for a particular impairment describes a degree of severity that the Social Security Administration presumes would prevent a person from performing substantial work. If your HIV infection is severe enough to meet or equal the listing, you will be considered disabled.
The listing for HIV infection has 11 parts. You will meet the listing and be disabled if you satisfy any part. Additionally, AIDS can result in numerous symptoms and signs. You may have multiple distinct physical and mental impairments, as well as medication side-effects. If you have two or more impairments that are close to listing-level severity when considered separately, your claim may be allowed on the basis that you condition is equivalent in severity to a listing.
Low CD4 Counts
Low CD4 counts are associated with shorter life-expectancy. For example, patients with an average CD4 count of 87/mm3 were said to have a life-expectancy of under 3 years. The general presumption by the Social Security Administration in the cancer listings is that a life-expectancy of 3 years or less is the basis for listing-level severity. Therefore, it would seem reasonable that life-expectancy in HIV / AIDS should receive similar consideration. However, the Social Security Administration prohibits use of the CD4 count alone in determining disability. Claimants with extremely low CD4 counts are almost always so sick that they can be allowed on the basis of some impairment or combination of impairments. The Social Security Administration adjudicator should be extremely hesitant to deny any claimant with a CD4 count of 200/mm3 or less. A value that low is AIDS by Centers for Disease Control (CDC) definition.
Meeting Listing 14.08A for HIV Infection (Bacterial Infections)
You will meet listing 14.08A if you are infected with HIV (adequately documented) and have any of the following bacterial infections:
1. Mycobacterial infection (for example, caused by M. avium-intracellulare, M. kansasii, or M. tuberculosis) at a site other than the lungs, skin, or cervical or hilar lymph nodes, or pulmonary tuberculosis resistant to treatment; or
2. Nocardiosis; or
3. Salmonella bacteremia, recurrent non-typhoid; or
4. Multiple or recurrent bacterial infections, including pelvic inflammatory disease, requiring hospitalization or intravenous antibiotic treatment three or more times in a 12-month period.
Part A.1 Mycobacterial Infection
Part A.1 is satisfied by resistant infection with any of the Mycobacteria. Mycobacterium tuberculosis is the most important species in regard to human infection and is the cause of TB. Usually, progression of TB or other mycobacterial infections is slow. But when immunity is weak, as in AIDS, progression can be rapid with death occurring months rather than years. HIV positive individuals, with or without AIDS, are more likely to be infected.
Infection in the lungs, lymph nodes at the root of the lungs (hilar nodes), skin, or lymph nodes in the neck (cervical nodes) does not qualify. These areas are commonly infected by T.B. and do not demonstrate the kind of disseminated disease (spread through the body) that might occur with severe immune system depression. If you have T.B. in these areas and do not meet Part A.1, you may still qualify for Social Security disability benefits under other listings. For example, you may qualify under listing 3.08 for persistent respiratory infections.
“Resistant to treatment” means that a condition did not respond adequately to an appropriate course of treatment. Whether a response is adequate, or a course of treatment appropriate, will depend on the facts of the particular case.
Part A.2 Nocardiosis
Part A.2 is satisfied if you have Nocardiosiss, a disorder caused by actinomyces bacteria. There are a number of Nocardia species, and infection with any of them can satisfy the listing. You need only be diagnosed with the disorder—any degree of infection, anywhere in your body is enough. Local infections of the lung and skin may occur and the lesions tend to be inflammatory and pyogenic (pus-producing). Disseminated disease (spread throughout the body) can be associated with abscesses in any bodily organ, including bone, joints, heart, retina, kidneys, and brain. There is about a 55% mortality in immunocompromised patients such as those with AIDS. Tissue samples for diagnostic testing can be obtained by biopsy (such as skin), respiratory secretions, or aspirated out of deep abscesses.
Part A.3 Salmonella Bacteremia
Part A.3 is satisfied by recurrent non-typhoid Salmonella bacteremia. Bacteremia means the organisms are in the bloodstream. That is a very serious event demonstrated by culturing the bacteria from blood. Non-typhoid salmonellosis in the U.S. is a very common cause of food poisoning, increasingly so as food moves internationally to the U.S. from countries where fecal contamination of fruits and vegetables may have occurred. The handling of food by illegal immigrants who have not been checked for communicable diseases may also facilitate infection. Improperly cooked eggs can also be a source of infection.
Most Salmonella infections do not cause bacteremia. Identification of the organism in stool samples does not qualify as bacteremia.
Salmonella typhi and S. paratyphi are typhoid forms of salmonellosis and are excluded from part A.3.
Part A.4 Multiple or Recurrent Bacterial Infection
Part A.4 requires multiple or recurrent bacterial infection(s), including pelvic inflammatory disease, requiring hospitalization or intravenous antibiotic treatment 3 or more times in 1 year. The Social Security Administration should be able to obtain documentation of these events from your medical records.
“Recurrent” means that a condition that responded adequately to an appropriate course of treatment has returned after a period of remission or regression. The extent of response (or remission) and the time periods involved will depend on the facts of the particular case. For example, if you had 3 recurrences in a period of a couple of months, then went 8 months with no recurrence of any kind of serious infection after being stabilized on a treatment regimen, it would be difficult to argue that those first occurrences were actually characteristic of your condition at the time of application of benefits. However, in a close case, you should get the benefit of the doubt.
Meeting Listing 14.08B for HIV Infection (Fungal Infections)
You will meet listing 14.08B if you are infected with HIV (adequately documented) and have any of the following fungal infections:
1. Aspergillosis; or
2. Candidiasis involving the esophagus, trachea, bronchi, or lungs, or at a site other than the skin, urinary tract, intestinal tract, or oral or vulvovaginal mucous membranes; or
3. Coccidioidomycosis, at a site other than the lungs or lymph nodes; or
4. Cryptococcosis, at a site other than the lungs (for example, cryptococcal meningitis); or
5. Histoplasmosis, at a site other than the lungs or lymph nodes; or
6. Mucormycosis; or
7. Pneumocystis pneumonia or extrapulmonary Pneumocystis infection.
In Part B.1 and B.6 the presence of fungus anywhere in the body in any degree of severity is sufficient for allowance under the listing. Parts B.2 through 5 exclude infection in at certain locations, because the presence of fungal organisms at those sites does not necessarily imply severe immune system compromise.
Mycotic (Fungal) Infections in General
A number of pathogenic fungi can infect human beings. Exposure of the lungs to fungal spores is not normally sufficient to produce infection. Many who are infected have no symptoms or only modest symptoms, and never even see a physician. The situation is different for debilitated individuals, such as those with AIDS. Without treatment, severe fungal infections can easily be fatal.
Fungi are ubiquitous; there is no way to avoid them. For instance, histoplasmosis spores are prevalent in the soil. Unlike tuberculosis, infection of one person with fungi does not pose a contagion risk to others. Pulmonary infection occurs as a result of inhalation of fungal spores.
Drugs are useful in treating severe mycotic infections. In patients with immune system compromise, like AIDS after life-threatening infection, maintenance medication is required to prevent recurrence. Generally speaking, modern anti-fungal drugs can be used long-term with minimal toxicity.
The diagnosis of fungal infections is usually most accurately done by culture of sputum or other material suspected of being infected. Unfortunately, this is not always possible. For example, the patient might not have enough of a cough to produce samples of infected sputum. There is no fungal test that can rule out infection with enough accuracy that its results supercede the treating doctor’s judgment based on the clinical information. If the treating physician is sufficiently convinced of the presence of active infection that anti-fungal treatment is given, the Social Security Administration should generally accept that conclusion.
Part B.1 – Aspergillosis
Aspergillosis is usually infection with the fungus Aspergillus fumigatus. It enters the lungs by being inhaled. This is a dangerous fungus that can spread rapidly to other organs such as the brain and result in death. Several types of the disease should be distinguished: 1) invasive aspergillosis, 2) fungus balls, 3) chronic necrotizing pulmonary aspergillosis, and 4) allergic bronchopulmonary aspergillosis.
Invasive aspergillosis – This is an aggressive and life-threatening disorder occurring in immunocompromised individuals, such as those with AIDS. Symptoms may be fever, chest pain, and cough with or without sputum production. The diagnosis is strongly suggested by the presence of aspergillus in sputum and a decreased neutrophil white blood cell count (neutropenia). Invasive aspergillosis can spread from the lungs to multiple other organs. Intravenous amphotericin B is required to control this disease but, given alone, is associated with a 65% mortality. When combined with other anti-fungal drugs (itraconazole), mortality improves to 36%. Complete control of the fungus infection is only possible in a minority of cases and the relapse rate is very high.
Fungus balls – Aspergillus has a tendency to start growing in lung cavities left by other types of fungus. Fungus balls are technically known as mycetomas and aspergillus fungus balls are called aspergillomas. The presence of a fungus ball is not necessarily ominous; many individuals are unaware of its existence until incidentally diagnosed. The great majority has some degree of hemoptysis (coughing up blood) at some time, but it is usually mild. Massive hemoptysis can occur when fungus grows into a blood vessel in the wall of the cavity, and this is clearly a much more serious condition. Unlike many other pulmonary fungal infections, the diagnosis is usually not difficult. Serum immune tests are virtually always positive and chest X-rays characteristically show one or more thick-walled fungus ball cavities in the upper lobes of the lungs.
Chronic necrotizing aspergillosis – In this disorder, the fungus ball or other fungal infection in the lungs becomes more aggressive than usual. Chest X ray shows progressive cavitation, with or without fungus balls, in the upper lobes of the lungs. There is usually some type of underlying disease that impairs immunity. Infection is established by fungal culture done on a sputum sample. Most people with chronic necrotizing aspergillosis already have some type of chronic lung disease, such as emphysema from smoking cigarettes. After control of the acute infection with intravenous amphotericin B, chronic treatment with oral anti-fungal drugs is usually needed to suppress recurrence. The limiting effects of both any underlying disease and additional lung damage caused by the fungus infection must be taken into consideration.
Allergic bronchopulmonary aspergillosis (ABPA) – ABPA is an allergic reaction to inhaled aspergillus fungus. It characteristically fluctuates in severity, with wheezing, coughing and fever.
Part B.2 – Candidiasis
Candidiasis moniliasis (“yeast infection”) is caused by Candida albicans, as well as some other species. Candida is one of the most pervasive fungi in the human environment, and commonly can be found to some degree in the normal gastrointestinal tract (mouth, esophagus, stomach, intestines) and skin. Vulvovaginal candidiasis is common and usually can be controlled with topical anti-fungal medication. Thus, it is not the lack of contact with candida that limits serious human infection, but the fact that the fungus can be kept under control by a normal immune system. Unlike many other fungi which usually enter the body through inhalation and on rare occasions spread from the lungs to the remainder of the body, just the opposite happens with candidiasis. The disseminated disease for which immunocompromised individuals are at risk develops from many points of possible entry other than the lungs. Patients with HIV / AIDS may have oral thrush—active candidiasis of the mouth that can be seen as white patches. Candidiasis of the esophagus is another problem in those with decreased immunity, and can be diagnosed with esophageal endoscopy.
Part B.3 – Cocidiodomycosis
Coccidioidomycosis is a mycotic infection caused by the fungus Coccidioides immitis. Entry into the body is almost always by inhalation. Most cases of infection with coccidioides are not life-threatening. More than half of infections with this organism do not even involve symptoms and the only evidence of infection is a positive fungal antibody skin test. However, as in other pulmonary fungal infections, there are some instances of advanced and life-threatening pneumonia.
In regard to diagnosis, fungal skin tests may be positive but all that proves is exposure at some point in time; significant active infection cannot be inferred. Furthermore, it is possible to have a negative skin test and still have advanced (disseminated) disease. Diagnosis must depend on medical judgment applied to all factors in the case. Unlike most other fungal infections, culture of coccidioides presents significant risk to those handling the organism. When cultures are done, secure biological facilities are necessary. Obviously, asking for a culture of this fungus is not something the Social Security Administration would do and the treating physician is not likely to have the results of such a test.
Even those with severe pulmonary coccidioidomycosis are likely to survive with treatment. However, as in most medical disorders, complications are possible. There are cases in which the fungus escapes the lungs and becomes disseminated. Dissemination can occur to any organs, such as the meninges covering the brain, bone (fungal osteomyelitis), and skin. This is most likely to happen in immunocompromised individuals such as those with AIDS. Mortality for the disseminated form is high—around 50% in those who are immunocompromised. As would be expected, the more the immune system is weakened, the less able the person will be able to fight off the disease. For example, individuals with a CD4 (T lymphocyte) white blood cell count of less than 200 cells/mm3 have a grim prognosis. Non-immunocompromised patients have a much better prognosis. More severely ill patients may require treatment for a year; those with meningitis may require indefinite anti-fungal therapy.
Part B.4 – Cryptocococcis
Cryptocococcis is caused by Filobasidiella neoformans. It enters the body by inhalation. Dissemination to the rest of the body can occur from the lungs in some instances. Dissemination is particularly likely to affect the meninges (membranes surrounding the brain) and the kidneys, but can also involve bones, skin, and the prostate gland. As with other fungal infections, individuals with immune system compromise are most at risk for disseminated disease. Significant pulmonary disease is very rare.
Cryptococcal meningitis is the major worry. Immune tests of cerebrospinal fluid (CSF) can diagnose at least 90% of cases of meningitis. Immune tests of serum for cryptococcus antigen are also highly sensitive if the patient has AIDS, but is extremely unreliable for diagnosing the absence of meningitis in non-AIDS patients. In cases of cryptococcal meningitis in AIDS, life-long anti-fungal treatment is required in survivors to prevent recurrence of infection.
Part B.5 – Histoplasmosis
Histoplasmosis is infection caused by Histoplasma capsulatum. When an infected person’s immune system is normal, acute infection with this organism usually runs a benign course. There are exceptions; histoplasmosis, even in a person with no immune system problems, can in rare instances cause severe fibrosis of structures—such as the pulmonary arteries—in the space between the lungs (mediastinum). Compression of the pulmonary arteries can result in pulmonary hypertension, heart disease, and even heart failure. In cases of more severe histoplasmosis, there can be severe cavitation of lung tissue—most likely in cigarette smokers with emphysema.
If the histoplasmosis escapes the lungs into the systemic circulation of the body, it can infect any organ, or even result in progressive disseminated histoplasmosis (PDH). Such individuals have anemia, decreased white blood cells (leukopenia), fever, an enlarged liver and spleen (hepatosplenomegaly), and decreased blood platelets (thrombocytopenia). Some may develop an ominous complication known as disseminated intravascular coagulation (DIC), associated with life-threatening abnormalities in the blood clotting. Unfortunately, PDH often occurs in AIDS patients after development of pulmonary disease. Culture of sputum is not likely to yield a diagnosis, but blood cultures can detect most cases (90%). In AIDS patients who survive PDH, life-long maintenance anti-fungal medication is required.
Part B.6 – Mucormycosis
Mucormycosis refers to any of the fungi occurring in the Order Mucorales. These are not rare fungi. Exposure in the environment is unavoidable. Mucorales fungal spores are ubiquitous in the environment, but do not bother people with normal immune systems. There are a very large number of specific species in this group, and no reason that any of them could not qualify if infecting a human being.
A major clinical characteristic of mycormycosis is a tendency to invade blood vessels, disrupt blood flow by causing blood clots (thrombi), and thereby cause local tissue death (infarction).
Mucormycosis, like other pathogenic fungi, are most likely to infect people with weakened immune systems, such as those with AIDS. In a particularly devastating form of infection known as rhinocerebral mucormycosis, Rhizopus arrhizus is responsible for 90% of the cases. The fungus enters the body through the nose, infects the sinuses and then spreads throughout the head, including the eyesocket (orbit), palate and brain. This is a horrendous disease with a high mortality. R. arrhizus is also responsible for half of pulmonary mucormycosis infections. Gastrointestinal mucormycosis can cause intestinal infarctions and ulcerations in the GI tract. It can also infect the skin and wounds.
Since the organism is environmentally ubiquitous, diagnosis depends on culture and microscopic examination of the organism in tissue in a proper clinical context, i.e., in patients with lesions apparently caused by a fungus. Any degree of infection by mucormycosis at any location in the body satisfies Part B.6.
Part B.7 – Pneumocystis
Part B.7 deals with pneumocystis carinii pneumonia (PCP) (see Figure 2 below), or any type of pneumocystis infection outside of the lungs (extrapulmonary infection), such as the heart, spleen, bone marrow, eye, liver, or skin. Any degree of infection anywhere in the body is sufficient to satisfy part B.7. PCP is a common infection in people with AIDS and a frequent cause of death. Some authorities consider pneumocystis to be a protozoan rather than a fungus. The organism is widespread in the environment and by several years of age, everyone has been exposed.
Meeting Listing 14.08C for HIV Infection (Protozoan and Helminthic Infections)
You will meet listing 14.08C if you are infected with HIV (adequately documented) and have any of the following protozoan or helminthic infections:
1. Cryptosporidiosis, isosporiasis, or microsporidiosis, with diarrhea lasting for 1 month or longer; or
2. Strongyloidiasis, extra-intestinal; or
3. Toxoplasmosis of an organ other than the liver, spleen, or lymph nodes.
Protozoans are microscopic animals. Helminths are worms. Part C does not include all of the types of protozoans or worms that frequently infect humans, but only those that are particularly likely to occur in someone whose immune system is compromised.
Part C.1 Cryptosporidiosis, Isosporiasis or Microsporidiosis
Part C.1 is satisfied by infection with any of several protozoans. Cryptosporidiosis is caused by the organism Cryptosporidium parvum. Present in animal gut, this parasite can be transmitted to humans by direct contact with infected animal tissue, through contaminated water, and by eating infected food. Microsporidia are also protozoan parasites that cause intestinal infection, especially when the CD4 lymphocyte count falls under 100/mm3 and in association with wasting syndrome. The microsporidia most likely to be involved in intestinal infection are Encephalitozoon intestinalis (see Figure 3 below) and Enterocytozoon bieneusi, although there are many other species that can cause infection of other tissues.
Isosporiasis is less common than cryptosporidial or microsporidial infection, but occurs by the same kind of fecal-oral transmission. The infective organism is Isospora belli (see Figure 4 below), affecting both humans and animals, and living in the epithelial cells that line the inside of the intestines. Infection is associated with a severe, non-bloody diarrhea and cramping abdominal pain. Persistence of infection can result in malabsorption of food and weight loss. In immunodepressed patients, the diarrhea can be severe. Unlike other protozoan infections, the blood eosinophil count may be high. Diagnosis is by identification of oocysts in stool.
Part C.1 requires diarrhea lasting at least 1 month, but otherwise has no requirements regarding medical severity. The treating physician’s medical records should document this problem.
Part C.2 Strongyloidiasis
The type of helminth worm considered by part C.2 is Strongyloides stercoralis. While this parasitic roundworm is most common in tropical and subtropical parts of the world, it can also be found in the Southern U.S. Infection occurs with the filariform larvae (see Figure 5 below) penetrate intact human skin. Entering the bloodstream, the worms then travel to the lungs where they penetrate the alveoli and move up the bronchi and trachea to the throat. They are then swallowed and move to the intestine to grow into adult, female worms that produce cysts that hatch and produce more worm larvae. These larvae can be excreted in the stool and also can bore through the intestinal wall.
The worm infection often produces no symptoms. When symptoms do occur, they are usually gastrointestinal: abdominal pain and diarrhea. Pulmonary symptoms (cough) can occur when the larvae are migrating through the lungs. Allergic-type (urticarial) skin rashes may occur, especially around the waist and over the buttocks. Potentially fatal disseminated strongyloidiasis is most likely in immunosuppressed patients. In these cases, there can be abdominal pain and distension, shock, as well as pulmonary and neurologic complications. Blood eosinophilia is generally present, except in the disseminated form.
Evidence of the worm outside of the intestine satisfies part C.2.
Part C.3 Toxoplasmosis
Toxoplasmosis is infection with the protozoan parasite Toxoplasma gondii (see Figure 6 below), which can affect humans and other mammals like cats, sheep, and pigs. However, cats are the definitive host needed for certain phases of the parasite’s life cycle. Cats get the parasite by eating raw meat. Humans acquire the infection by lack of proper hygiene after handling feline wastes and by eating undercooked meat. The oocysts shed by cats are very hard to kill and remain infectious for months. The disease is self-limiting and often asymptomatic in non-immunocompromised individuals, and usually does not require treatment. Individuals with a weakened immune system can have infection in the brain, eye, or lung. In patients with AIDS, brain infection (toxoplasmic encephalitis) is a significant problem with this organism.
To satisfy part C.3, toxoplasmosis must be demonstrated in tissue other than the liver, spleen, or lymph nodes. Otherwise, the location or medical severity is not a consideration.
Meeting Listing 14.08D for HIV Infection (Viral Infections)
You will meet listing 14.08D if you are infected with HIV (adequately documented) and have any of the following viral infections:
1. Cytomegalovirus disease at a site other than the liver, spleen or lymph nodes; or
2. Herpes simplex virus causing:
a. Mucocutaneous infection (for example, oral, genital, perianal) lasting for 1 month or longer; or
b. Infection at a site other than the skin or mucous membranes (for example, bronchitis, pneumonitis, esophagitis, or encephalitis); or
c. Disseminated infection; or
3. Herpes zoster:
a. Disseminated; or
b. With multidermatomal eruptions that are resistant to treatment; or
4. Progressive multifocal leukoencephalopathy.
Part D.1 Cytomegalovirus
Cytomegalovirus (CMV) is a widespread herpes virus. Few escape exposure at some time. Most healthy individuals have few or short-lived symptoms. Because of the usual lack of symptoms, most cases of CMV infection are never diagnosed. Once infected, however, a person is never rid of the virus, which lies dormant in the body with the possibility of reactivation in cases of immunosuppression. Infectious CMV may be shed in the bodily fluids (semen, blood, saliva, tears, urine, and breast milk) of a previously infected person with no symptoms. Infection can take place person to person through these fluids, or even through a transplanted organ.
Part D.1 is satisfied only for disease outside of the liver, spleen, or lymph nodes.
Part D.2 Herpes Simplex
Herpes simplex infection is one of the most common problems in HIV infection. Herpes simplex type 1 refers to the virus that causes cold sores, while genital herpes is mostly caused by type 2. However, type 1 can cause genital herpes and type 2 can cause cold sores. There is no cure and the virus remains latent in nerve tissue to flare up into active blisters on an intermittent basis. Genital herpes infection almost always occurs as a sexually transmitted disease, and individuals remain infectious between active flare-ups even though they have no symptoms or lesions. Oral herpes is not generally transmissible unless there is an active lip blister. Part D.2 makes no distinction between these two types of herpes. At least 80% of homosexual males have antibodies to both HSV-1 and HSV-2, which means they have been infected at some time in the past and have the virus in them. Therefore, an HIV-induced immunodeficient state is a perfect opportunity for the virus to run rampant.
Part D.2.a reference to mucocutaneous infection around the mouth, genitals, or anus requires a viral ulceration that lasts at least 1 month.
Part D.2.b specifically excludes mucous membranes (oral, genital, perianal), but is satisfied by infection at any other atypical site like the brain, esophagus, bronchi, or lungs. There is no duration requirement for these atypical locations; if the virus is present Part D.2.b is satisfied.
Part D.2.c recognizes the life-threatening severity of disseminated infection that only occurs in immunocompromised individuals. It is an extension of medical severity even beyond D.2.a or b. The mortality of such a condition is very high, especially since patients are already debilitated.
Part D.3 Herpes Zoster
Herpes zoster (shingles) is due to the same virus that causes varicella (chickenpox). Hence the name Varicella-Zoster virus. While chickenpox is a fairly mild disease in normal children, it can be deadly in those who are immunocompromised as a result of leukemia, AIDS, or some other serious illness. As adults, the virus that lies latent in nerves can reactivate along the skin distribution of the nerve (dermatome) at unpredictable times through life to produce a painful rash of small blisters (vesicular rash). The dermatomes involved are usually areas on the chest or lower back. Even in non-immunocompromised people, pain known as post-herpetic neuralgia may last as long as a month after the virus regresses and the blisters dry up.
Part D.3.a requires disseminated infection. Disseminated means widely spread throughout the body, but noone would claim that every part of the body had to be involved. “Disseminated” is a word that applies to disorders that start in one location and then spread to multiple distant locations in the body. The word is not be appropriate for disorders that are generalized by nature, such as leukemia, blood diseases, or high blood pressure. Also, neurological disorders are not ever described as “disseminated,” and impairments that by their nature are confined to a particular organ, such as kidney disease, are never described as “disseminated.” Cancer is sometimes described as disseminated if there are many distant metastatic tumors. The most frequent use of the word is to refer to the spread of infection widely from some local point, excluding infections like influenza that are by their nature systemic illnesses.
Part D.3.b requires either that the blistering eruption occur along more than one nerve (“multidermatomal”) or that there be disseminated viral infection to locations other than sensory nerves to the skin, such as involvement of the brain. However, even disseminated herpes zoster in immunocompromised individuals is usually not fatal. Additionally, the herpes must be resistant to treatment. “Resistant to treatment” means that the impairment does not significantly improve with therapy.
Part D.4 Progressive Multifocal Leukoencephalopathy
Progressive multifocal leukoencephalopathy (PML) is a disease of the white matter—the data transmission system—of the brain, a type of demyelinating disease. The spinal cord is spared. This disorder is characterized by progressive neurological abnormalities such as loss of vision, paralysis (hemiparesis), sensory disturbances, and loss of coordination (ataxia). Mental deficits characteristic of worsening dementia are also present. At the end of a life expectancy averaging about 6 months, patients succumb in a state of cortical (neurological) blindness, global paralysis, and marked dementia. Rare individuals may live several years.
Polyomaviruses known as JC virus (JCV) and BK virus (BKV) are implicated in the disorder. JVC is known to destroy oligodendrocyte brain cells. The monkey virus known as simian virus 40 (SV40) is very similar and may also be responsible for some cases of PML. Unfortunately, these viruses are common in the environment. About half of normal people have latent JCV or BKV in their kidneys. Immune suppression probably allows activation of these organisms. Nearly half of PML deaths occur in the context of HIV infection.
Since PML is invariably fatal in any individual, it is understandable that part D.4 has no requirement beyond diagnosis. The medical evidence of record will inevitably contain a great deal of information, including brain imaging MRI studies showing severe loss of white matter.
Meeting Listing 14.08E for HIV Infection (Malignant Neoplasms)
You will meet listing 14.08E if you are infected with HIV (adequately documented) and have any of the following malignant neoplasms:
1. Carcinoma of the cervix, invasive, FIGO stage II and beyond; or
2. Kaposi’s sarcoma with:
a. Extensive oral lesions; or
b. Involvement of the gastrointestinal tract, lungs, or other visceral organs; or
3. Lymphoma (for example, primary lymphoma of the brain, Burkitt’s lymphoma, immunoblastic sarcoma, other non-Hodgkin’s lymphoma, Hodgkin’s disease); or
4. Squamous cell carcinoma of the anal canal or anal margin.
Meeting Listing 14.08F for HIV Infection (Skin and Mucous Membrane Lesions)
You will meet listing 14.08E if you are infected with HIV (adequately documented) and have conditions of the skin or mucous membranes (other than described in B.2, D.2, or D.3, above), with extensive fungating or ulcerating lesions not responding to treatment (for example, dermatological conditions such as eczema or psoriasis, vulvovaginal or other mucosal Candida, condyloma caused by human Papillomavirus, genital ulcerative disease).
Part F deals with extensive skin or mucous membrane lesions other than those already covered in part B.2, D.2, or D.3 above. The mucous membranes are those moist membranes that form part of the outer surface of the body, occurring in the oral cavity and throat, sinuses, or the vulvovaginal membranes.
Theoretically, any extensive lesion would qualify. “Extensive” could reasonably be interpreted to mean lesions of large size and/or marked medical severity. The meaning of this word has to be tempered by the type of disorder and its location. A smaller, more medically severe disorder could be as “extensive” as a larger, more benign one. For example, condyloma acuminata (venereal warts) could be very extensive over the genitalia and difficult to control medically, while it is possible to have a large surface area of mild psoriasis that is not as incapacitating. Of course, some cases of psoriasis are very debilitating, but the point is that judgment must be applied on a case by case basis. Multiple large candidal fungus lesions in the mouth would certainly qualify. Genital ulcerative disease, as may occur in Behcet’s syndrome, can be both debilitating and painful. Severe pain should decrease, to some degree, the physical size of lesions that would be considered “extensive.” The disorders mentioned by Part F are only examples; any mucous membrane or skin lesions could potentially qualify under this part of the listing.
Meeting Listing 14.08G for HIV Infection (HIV Encephalopathy)
You will meet listing 14.08G if you are infected with HIV (adequately documented) and have HIV encephalopathy, characterized by cognitive or motor dysfunction that limits function and progresses.
Many opportunistic infections associated with HIV-related immunodeficiency can destroy brain tissue. However, part G is concerned specifically with brain damage caused by HIV itself.
Motor abnormalities include such things as weakness or paralysis, tremors, poor balance, dyscoordinated gait (ataxia), and poor finger coordination. These abnormalities can be elicited by physical examination and progression can be demonstrated by treating physician records documenting deterioration. The neurological abnormalities do not have to be as severe as the standard used for most neurological disorders. It is the progression that is of utmost importance, because it implies a relentless and irreversible worsening. Of course, if the HIV encephalopathy does satisfy a neurological listing such as that dealing with degenerative brain disease (listing 11.17), there is no reason it could not be used. The damage that HIV can do to the brain is almost too horrible to describe in its global and devastating effect. There is probably no other agent that can as effectively destroy the brain as HIV.
The other way part G can be satisfied is with cognitive difficulties that are inevitable with destruction of brain tissue. This damage results in an organic brain syndrome as described in listing 12.02, and could be adjudicated as an allowance only under that listing. Part G does not specify that the requirements of listing 12.02 be satisfied or even mention that listing, so listing 12.02 requirements should not be used as a standard for adjudicating the claim under G. Again, it is the progression of deteriorating in thinking that is important. While it is not necessary to have formal psychological testing, it would be wise to obtain neuropsychological testing when the severity of the impairment is not clear. The Social Security Administration adjudicator should communicate with other family members, especially the spouse or other caregiver, and with the treating physician regarding the claimant’s abilities and activities of daily living.
Meeting Listing 14.08H for HIV Infection (Wasting Syndrome)
You will meet listing 14.08H if you are infected with HIV (adequately documented) and
- Have HIV wasting syndrome,
- Characterized by involuntary weight loss of 10 percent or more of baseline (computed based on pounds, kilograms, or body mass index (BMI)) or
- Other significant involuntary weight loss as described in 14.00F5, and
- In the absence of a concurrent illness that could explain the findings with either:
1. Chronic diarrhea with two or more loose stools daily lasting for 1 month or longer; or
2. Chronic weakness and documented fever greater than 38o C (100.4oF) for the majority of 1 month or longer.
Wasting syndrome is a finding of advanced HIV disease. According to listing 14.00F5, an involuntary weight loss of at least 10 percent of baseline is always considered “significant.” Loss of less than 10 percent may or may not be significant, depending on your baseline weight and body build. For example, a 7-pound weight loss in a 100-pound woman who is 63 inches tall might be considered significant; but a 14-pound weight loss in a 200-pound woman who is the same height might not be significant.
It is important that adequate medical records be available to document weight loss and the other requirements of part H, such as the absence of other explanatory illness, frequency of diarrhea (H.1) and persistent fever (H.2). A possible problem with part H is that claimants may allege diarrhea, fever, and weight loss that is apparently unknown to their treating physician. However, with illness this severe that is unlikely; they would probably be under close medical supervision.
Meeting Listing 14.08I for HIV Infection (Treatment-Resistant Diarrhea)
You will meet listing 14.08I if you are infected with HIV (adequately documented) and have diarrhea, lasting for 1 month or longer, resistant to treatment, and requiring intravenous hydration, intravenous alimentation, or tube feeding.
To meet this listing, you will need to have been hospitalized, so documentation should be easy to obtain. Hospitals are sometimes slow to respond to medical record requests, and treating physicians do not dictate discharge summaries until the patient has left the hospital. In fact, the discharge summary might not be dictated until long after the patient has left. This problem can be even worse if a university medical center is involved and the file disappears onto some professor’s desk, or is not dictated by a resident in training. The Social Security Administration adjudicator or claimant representative should directly contact the treating physician and ask for a letter discussing the salient characteristics of the claimant’s condition, treatment, and response to that treatment. Otherwise, there may be a long wait.
Meeting Listing 14.08J for HIV Infection (Other Infections)
You will meet listing 14.0J if you are infected with HIV (adequately documented) and have one or more of the following infections (other than described in A through I, above). The infection(s) must either be resistant to treatment or require hospitalization or intravenous treatment three or more times in a 12-month period.
1. Sepsis; or
2. Meningitis; or
3. Pneumonia; or
4. Septic arthritis; or
5. Endocarditis; or
6. Sinusitis documented by appropriate medically acceptable imaging.
Sepsis (J.1) refers to a severe, systemic infection caused by pathogenic organisms, or toxins produced by such organisms, in tissue or the bloodstream. Sepsis is frequently bacterial, but could be caused by other microorganisms, e.g., fungal sepsis.
Parts J.1 through 5 are life-threatening and require intravenous antibiotics. Sinusitis (A.6) is treated in most people with oral antibiotics and that would not qualify under part J. However, the severe sinusitis contemplated in part J is associated with opportunistic infection in a person whose immune system is suppressed. In these instances, intravenous antibiotics may be required. Either CT scanning or MRI can serve as acceptable imaging under A.6. Excessive weight should not be given to imaging alone in evaluation of sinusitis. Imaging is frequently abnormal as a result of a previous infection, although there is no ongoing infection.
Meeting Listing 14.08K for HIV Infection (Repeated Manifestations of HIV Infection)
You will meet listing 14.08K if you are infected with HIV (adequately documented) and have repeated manifestations of HIV infection, including those listed in 14.08A-J, but without the requisite findings for those listings (for example, carcinoma of the cervix not meeting the criteria in 14.08E, diarrhea not meeting the criteria in 14.08I), or other manifestations (for example, oral hairy leukoplakia, myositis, pancreatitis, hepatitis, peripheral neuropathy, glucose intolerance, muscle weakness, cognitive or other mental limitation) resulting in significant, documented symptoms or signs (for example, severe fatigue, fever, malaise, involuntary weight loss, pain, night sweats, nausea, vomiting, headaches, or insomnia) and one of the following at the marked level:
1. Limitation of activities of daily living.
2. Limitation in maintaining social functioning.
3. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.
Part K is satisfied by abnormalities not severe enough to qualify under other parts of the listing, provided that there are also marked functional restrictions in activities of daily living, social functioning, or task completion. The listing gives numerous examples of manifestations of HIV infection that could be used.
“Repeated” means that:
- The manifestations occur on an average of three times a year, or once every 4 months, each lasting 2 weeks or more; or
- The manifestations do not last for 2 weeks but occur substantially more frequently than three times in a year or once every 4 months; or
- They occur less frequently than an average of three times a year or once every 4 months but last substantially longer than 2 weeks.
Your impairment will satisfy this criterion regardless of whether you have the same kind of manifestation repeatedly, all different manifestations, or any other combination of manifestations; for example, two of the same kind of manifestation and a different one.
Activities of Daily Living
Activities of daily living include the ability to do household chores, grooming, hygiene, use a post office, take public transportation, and pay bills. These activities could be limited by symptoms such as pain, severe fatigue, anxiety, or difficulty concentrating. However, the nature, location, duration, precipitating cause, and severity of any limiting symptoms should be described in detail as to how they limit your activities.
Social functioning involves the ability to interact with others on a sustained basis that is independent, appropriate, and effective—and this includes effective communication. Serious limitations in social interaction could be caused by symptoms such as pain, severe fatigue, anxiety, or difficulty concentrating.
Although not defined by the Social Security Administration, “independent,” “appropriate,” and “effective” should have a common-sense meaning. Behavior, including social interactions, that are closely supervised at the instigation of someone else are not independent. Appropriate behaviors are perhaps mostly easily defined by what is not appropriate, such as withdrawal, frequent crying, anger, or emotional outbursts that make social interactions difficult or impossible.
Effective sustained communication includes the ability to comprehend and respond to spoken or written language with sufficient clarity and focus that useful information can be exchanged in a reasonable amount of time.
Completing Tasks in a Timely Manner
Completing tasks in a timely manner involves the ability to sustain concentration, persistence, or pace to permit timely completion of tasks commonly found in work settings. The Social Security Administration needs specific information to support these limitations. Examples don’t necessarily have to involve a work-place, but should involve situations that allow the adjudicator to deduce your ability to perform work-related tasks.
If you have difficulty completing tasks around the house or in other environments, you or your family members should be able to provide detailed information regarding failed tasks, including the nature of the task, length of time until task-completion failure, and the symptoms that caused the failure. For example, inability to dust or vacuum for more than ten minutes because of fatigue is clear and to the point. The inability to finish grocery-shopping because of difficulty concentrating is another example. There are many possibilities.
The ability to perform some routine activities of daily living does not necessarily mean that you will fail to satisfy this part of the listing. For example, the ability to prepare a small, simple meal should not be cited as a basis for rejecting qualification under this part of the listing.
Continue to Residual Functional Capacity Assessment for HIV / AIDS.
Go back to About HIV Infection and Disability.
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