Overview
HIV-related Kaposi sarcoma (also called AIDS-related Kaposi sarcoma or epidemic Kaposi sarcoma) is a type of cancer that develops in people living with HIV, the virus that causes AIDS. It is caused by a second virus called Human Herpesvirus 8 (HHV-8), also known as Kaposi sarcoma-associated herpesvirus (KSHV). When HIV weakens the immune system, HHV-8 can trigger the abnormal growth of blood vessel cells, leading to tumors that most often appear on the skin but can also affect the mouth, lymph nodes, and internal organs such as the lungs and digestive tract. The most visible sign is usually painless, discolored patches or raised bumps on the skin that can be pink, red, purple, or brown. These lesions can appear anywhere on the body and may grow or spread over time. When the disease affects internal organs, it can cause more serious problems like difficulty breathing, swallowing, or digestive issues. This condition is classified as 'obsolete' in some medical coding systems because modern HIV treatment — especially antiretroviral therapy (ART) — has dramatically reduced how often it occurs and how severe it becomes. When HIV is well-controlled with ART, the immune system recovers and Kaposi sarcoma often shrinks or disappears. For cases that need additional treatment, chemotherapy, radiation therapy, and targeted drugs like liposomal doxorubicin are available options.
Key symptoms:
Painless colored skin patches or raised bumps that are pink, red, purple, or brownSkin lesions that may grow larger or spread to new areas over timeSwelling in the legs, arms, or face due to blocked lymph vesselsSores or lesions inside the mouthShortness of breath or coughing if the lungs are affectedNausea, vomiting, or stomach pain if the digestive tract is involvedDifficulty swallowingUnexplained weight lossFatigue and general weaknessSwollen lymph nodes
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
5 eventsPanretin: FDA approved
Topical treatment of cutaneous lesions in patients with AIDS-related Kaposi's sarcoma.
Taxol: FDA approved
For the second line treatment of AIDS-related Kaposi's sarcoma.
DaunoXome: FDA approved
First line cytotoxic therapy for advanced, HIV related Kaposi's sarcoma.
Intron A: FDA approved
Treatment of selected patients with AIDS-related Kaposi's sarcoma.
Roferon-A: FDA approved
Treatment of AIDS related Kaposi's sarcoma.
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
6 availableDoxil
indicated for the treatment of AIDS-related Kaposi's sarcoma in patients after failure of prior systemic chemotherapy or intolerance to such therapy
POMALYST�
Adult patients with AIDS-related Kaposi sarcoma (KS) after failure of highly active antiretroviral therapy (HAART)
Panretin
Topical treatment of cutaneous lesions in patients with AIDS-related Kaposi's sarcoma.
DaunoXome
First line cytotoxic therapy for advanced, HIV related Kaposi's sarcoma.
Roferon-A
Intron A
Treatment of selected patients with AIDS-related Kaposi's sarcoma.
Clinical Trials
View all trials with filters →No actively recruiting trials found for OBSOLETE: HIV-related Kaposi sarcoma at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: HIV-related Kaposi sarcoma.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
2 resourcesTaxol
Bristol-Myers Squibb Pharmaceutical Research Institute
Travel Grants
No travel grants are currently matched to OBSOLETE: HIV-related Kaposi sarcoma.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Should I start or change my HIV antiretroviral therapy, and will that be enough to treat the Kaposi sarcoma?,Do I need additional cancer treatment beyond HIV medication, and what are my options?,How will we know if the treatment is working — what tests will you use to monitor my progress?,Are any of my internal organs affected, and do I need scans or other tests to check?,What side effects should I expect from treatment, and how can I manage them?,Are there clinical trials I might be eligible for?,What support services are available to help me cope with the emotional and social aspects of this diagnosis?
Common questions about OBSOLETE: HIV-related Kaposi sarcoma
What is OBSOLETE: HIV-related Kaposi sarcoma?
HIV-related Kaposi sarcoma (also called AIDS-related Kaposi sarcoma or epidemic Kaposi sarcoma) is a type of cancer that develops in people living with HIV, the virus that causes AIDS. It is caused by a second virus called Human Herpesvirus 8 (HHV-8), also known as Kaposi sarcoma-associated herpesvirus (KSHV). When HIV weakens the immune system, HHV-8 can trigger the abnormal growth of blood vessel cells, leading to tumors that most often appear on the skin but can also affect the mouth, lymph nodes, and internal organs such as the lungs and digestive tract. The most visible sign is usually p
How is OBSOLETE: HIV-related Kaposi sarcoma inherited?
OBSOLETE: HIV-related Kaposi sarcoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does OBSOLETE: HIV-related Kaposi sarcoma typically begin?
Typical onset of OBSOLETE: HIV-related Kaposi sarcoma is adult. Age of onset can vary across affected individuals.
What treatment and support options exist for OBSOLETE: HIV-related Kaposi sarcoma?
7 patient support programs are currently tracked on UniteRare for OBSOLETE: HIV-related Kaposi sarcoma. See the treatments and support programs sections for copay assistance, eligibility, and contact details.