Lorenzo's oil

This article describes Lorenzo's oil . For the feature film of the same name, see Lorenzo's Oil (film) .

Lorenzo's oil is a 4: 1 mixture of glycerol esters of oleic acid and erucic acid to suppress the symptoms of adrenoleukodystrophy (ALD), a hereditary disorder of fatty acid metabolism. The two long-chain monounsaturated fatty acids contained are intended to reduce the occurrence of excessively long-chain saturated fatty acids by suppressing their formation by inhibiting enzymes . Excessively long-chain saturated fatty acids are found in high concentrations when ALD is present. The name Lorenzo's oil goes back to the well-known ALD patient Lorenzo Odone, whose parents developed the mixture through experiments with various olive and rapeseed oils.

The clinical effectiveness of the oil is controversial. A large-scale placebo-controlled study was intended to provide definitive information on the effectiveness, but was discontinued due to the feared side effects in the patients treated only with placebo.

Development of Lorenzo's oil by the Odone family

Lorenzo Odone was probably the best-known ALD patient. He was born on May 29, 1978 in the Comoros . At the age of five he began to experience symptoms. He bumped into furniture and shortly thereafter lost sight and hearing.

The doctors diagnosed the boy with ALD, a rare, incurable hereditary disease that occurs in men, in which the lipid metabolism is disturbed and which would sooner or later lead to death. In the case of Lorenzo, his doctors estimated his further life expectancy at a maximum of two years. Lorenzo's father Augusto Odone, himself not a doctor, then did extensive research in libraries and the specialist literature of the time and got in touch with other affected persons and experts.

Demographic study results suggested to him that certain food components were able to alleviate the clinical picture. Chemical analyzes showed that certain ingredients of vegetable oils were involved; the massive consumption by millions of people, albeit in small quantities, suggested harmlessness. The extraction of the oil components for targeted effectiveness tests was commissioned.

A blood relative of Odone's family, who had the genetic defect recessively, decided to try it on herself. She tolerated several consecutive ingestions of the oil mixture so that efficacy tests could be carried out on ALD patients. Direct medical or even clinical observation was only given within the framework of Odone's relationships with other patients. The extracted oil was named after Lorenzo Odone in Lorenzo's oil and patented under this name by Augusto Odone.

Lorenzo Odone died of aspiration pneumonia on May 30, 2008 at the age of 30 .

media

• The Odone family's struggle for further, improved treatment options for ALD was filmed in 1992 by George Miller under the name Lorenzo's Oil with Nick Nolte and Susan Sarandon in the lead roles.
• In 1996 the theme was taken up in the song Lorenzo (album: Dance Into the Light ) by Phil Collins .

Eligibility for reimbursement in Germany

With the judgment of the Federal Social Court in Kassel on Lorenzo's oil on February 28, 2008 it is finally clear that this mixture is not paid for by the statutory health insurances because it is not reimbursable as a medicine or as a dietary food. A different ruling by the Hessian State Social Court from January 2007 was thus invalid.

Individual evidence

1. ↑ Alexander Semmler, Wolfgang Köhler, Hans H. Jung, Michael Weller, Michael Linnebank: Therapy of X-linked adrenoleukodystrophy. In: Expert Review of Neurotherapeutics . 8 No. 9, September 2008, pp. 1367-1379. PMID 18759549 , doi: 10.1586 / 14737175.8.9.1367 .
2. ^ Hugo W. Moser, Ann B. Moser, Kim Hollandsworth, N. Hong Brereton, Gerald V. Raymond: In: Journal of molecular neuroscience. 33, No. 1, September 2007, pp. 105-113 ISSN  0895-8696 , doi: 10.1007 / s12031-007-0041-4 , PMID 17901554 .
3. ^ Hugo W. Moser, Gerald V. Raymond, Shou-En Lu, Larry R. Muenz, Ann B. Moser, Jiahong Xu and others: Follow-up of 89 asymptomatic patients with adrenoleukodystrophy treated with Lorenzo's oil. In: Archives of Neurology. 62, No. 7, 2005, pp. 1073-1080 ISSN  0003-9942 , doi: 10.1001 / archneur.62.7.1073 , PMID 16009761 .
4. ↑ Marc Engelen, Stephan Kemp, Marianne de Visser, Björn M. van Geel, Ronald JA Wanders, Patrick Aubourg, Bwee Tien Poll-The: In: Orphanet Journal of Rare Diseases. 7, August 13, 2012, p. 51, ISSN  1750-1172 , doi: 10.1186 / 1750-1172-7-51 , PMC 3503704 (free full text), PMID 22889154 .
5. ↑ Federal Social Court: Judgment of February 28, 2008, Az .: B 1 KR 16/07 R ( juris.bundessozialgericht.de )
6. ↑ "Cash registers have to pay Lorenzo's oil". Az. L 8 KR 18/05 Press release of the State Social Court of Hesse from January 30, 2007.

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