Thalidomide, the once-banned sleep-aid that caused a wave of severe and deadly birth defects in the late 1950s and early 1960s, has been reintroduced into the AIDS market (1), and was specifically used on at least one ICC resident in 2003-2004.
I was told the story of a boy named Seon by child-care workers, nurses, former child residents and guardians of children in ICC. Seon was being dosed with many drugs at once through a gastric-tube into his stomach, because, I was told, he failed to adhere to his regimen.
I wrote about it in Inside Incarnation, New York Press, 2005 (2):
He had all these soft, fatty lumps. We even called him lumpy. [said Mimi Pascual, former ICC childcare worker]. They sent him to get the lumps on his neck removed in surgery, and they would just grow back. They told us it was cancer, but he was on all those drugs.
He had a tube, and they were always pumping him. When we changed his diapers, it would come out like the drug mixture—rough and sandy like the ground-up pills.
Mimi said that after he died, she read about the phenomenon of buffalo humps, large fatty lumps on the back and neck that result from the newer AIDS drugs called protease inhibitors.
Rhonda, the former ICC nurse, and Mimi both remember another boy at ICC who developed a breast while on the drugs. He had a mastectomy, and then the other one started to grow. They couldnt hide that it was because of the drugs, but with Seon, they told us it was cancer, said Mimi.
Mimi has a paper from ICC, that she saved from Seons treatment. One day I got a sheet from the nurses about a drug they were going to give Seon—it said any woman who was pregnant or who was of child-bearing age should not touch the drug, even with gloves on.
I couldnt pronounce the name, so I kept the sheet. Thalidomide. Thats what they gave him.
They pumped Seon with it; he deteriorated fast, Mimi said. One day we came in and he was bleeding from every hole in his body—his rectum, his nose, his mouth. He was in such pain. He would scream when he had to go to the bathroom. They put him on a respirator.
They induced a coma with drugs so they could put him on a respirator. They told us they did it so he could breathe better. Mimi said, her voice getting a little rough. I sat with him; he couldnt talk, but he was crying-tearing from his eyes. He got all dry and scaly; he shriveled up like a snail-and he died.
Below is the verbatim text of a handout given to all ICC staff at the time of Seons drugging about the use of Thalidomide at the ICC. Note the warnings:
1. Pregnant women, or those considering having children, are forbidden from administering the drug.
2. The drugs toxicities are known to occur because of oral ingestion.
3. Latex gloves must be worn when touching the capsules.
4. If the drug touches the skin, mucous membrane, or eye of the person giving the drug, he or she must flush the affected area with running water for 15 minutes, then call an M.D.
Then note how the drug is to be administered to children at ICC Through a G-tube, directly into the stomach and intestines.
ICC Thalidomide Document.
[bold emphasis added]
ICC Policy/Procedure for Thalidomide Administration
1. All ICC Medical and Nursing (RNs and LPNs) Staff must read the attached Thalidomide safety information which addresses Thalidomide side effects as well as storage, administration and handling concerns, and be in-serviced by the physician or Director of Nursing. All CNA and Laundry staff must be in-serviced by the Physician or Director of Nursing. A memo will be distributed to all staff when a patient is to begin Thalidomide treatment.
2. The physician ordering Thalidomide must be registered with the STEPS program of the manufacturer.
3. The pharmacy supplying Thalidomide must be registered with the STEPS program of the manufacturer.
4. The physician and the pharmacy will comply with the STEPS program requirements involved in initiating a Thalidomide treatment order and for ongoing Thalidomide treatment orders. This includes appropriate informed consent counseling for the parent or guardian, and when appropriate, for the patient as well.
For female patients, pregnancy testing and contraceptive counseling may be indicated. Contraceptive counseling, if required due to a female patient’s childbearing potential, will be obtained through referral to an OB/GYN specialist.
5. The STEPS program requirements will be available at the Nursing Station.
6. The STEPS program informed consent will be obtained from the patient’s parent or guardian prior to ordering and administering Thalidomide.
7. Thalidomide will be stored in a locked cabinet in the medication closet and inventory and accountability records will be completed by each shift by Nursing.
8. Female nursing staff of childbearing potential who are planning pregnancy, or who may be or who are pregnant will NOT handle or administer Thalidomide at ICC. Thalidomide is a class X drug, and as such is absolutely contraindicated for administration to females who are or who may become pregnant. However, all known reports of birth defects related to Thalidomide occurred as a result of direct oral ingestion.
9. Latex gloves must be worn when handling thalidomide capsules. If the capsules must be opened, the nurse must wear gown and mask in addition to latex gloves, and may optionally also wear protective eyewear; all preparation of the drug is to occur on top of a disposable “chuck”.
After administration, all gloves, mask, gown, and items used in preparing and administering the medicine must be disposed of in a RED medical waste bag that is immediately sealed and placed in the locked dirty utility room. Thalidomide powder from opened capsules may be mixed with a semi-solid food for immediate oral administration or with water to create a suspension for immediate G-tube administration.
When administered via G-tube and attached adaptive extension tube, the extension tubing and G-tube must be well flushed after administration with a disposable syringe with 10-20 cc of water. One extension tube will be labeled and reserved only for Thalidomide administration.
The extension tube should be attached to the G-tube immediately before administration of Thalidomide; following Thalidomide administration but before disconnecting the tube, the tubing should be well-flushed with 10-20 cc of water using a syringe, then be disconnected from the G-tube, and then finally be rinsed in the sink with running tap water, dried, and stored in a separate container labeled “FOR THALIDOMIDE ADMINISTRATION ONLY.”
Thalidomide should not be administered in the feeding bag with G-tube feeds. The G-tube extension tube should be handled with gloves at all times and stored in a closed container when not in use.
10. As Thalidomide has been detected in the semen, urine, and plasma of patients taking thalidomide, and as data are not available concerning the presence of Thalidomide in other body fluids, universal precautions should be utilized in caring for patients taking thalidomide. Universal precautions should continue to be used when direct patient care activities which may involve exposure to bodily fluids or secretions are undertaken.
Latex gloves should be worn and additional Personal Protective Equipment (especially gowns, and also masks and eyewear,) should be used as indicated. The patient will have an individual waste basket and laundry basket provided. Diapers should be disposed of in the patient’s individual regular waste bag.
11. Thalidomide capsules which are not to be used (e.g. when an order is given to discontinue the medication) should be returned to the pharmacy. No Thalidomide should be disposed of on site at ICC.
12. If skin, mucous membrane, or eye contact with Thalidomide occurs, the staff member should immediately remove any contaminated clothing, taking care to not cause any additional skin, mucous membrane or eye contact, and flush the affected area with tap water for at least 15 minutes. The MD on call should then be contacted for any further advise.
[end of document]
Read more about the ICC investigation Here.