ENDitorial: The Transparent Drug Addict – Choosing Therapy Over Privacy?

(Dieser Artikel ist auch in deutscher Sprache verfügbar)

On 1 March 2007 the Austrian Department of Health enacted its highly
controversial revision of the Narcotic Substances Act, thus provoking an
immediate outcry from both the medical and pharmaceutical associations and
privacy experts.

The draft has also been heavily criticised in the run-up to its execution in
2006, Dr Hans Haltmayer, vice-president of the Austrian Association for
Medically Supported Therapy for Addicts (ÖGABS, Österreichische Gesellschaft
für die arzneimittelgestützte Behandlung von Suchtkranken) describing the
amendments as “the ultimate worst case scenario from a medical point of
view”. In order to receive substitution therapy, under the new law,
patients have to agree to have their intimate personal data transmitted by
their attending physician. Otherwise they won’t receive their medication. In
other words: if you require a substitute drug, you lose your right to the
legal requirement concerning your confidential medical communication. This
clearly constitutes an infringement of the European Convention of Human
Rights (Article 8, Right to Respect for private and family life) (Article
23b/6).

“In terms of privacy, this new act is a total disaster”, says Hans Zeger
from Arge Daten. Especially worrying is the amendment concerning a
certificate of substitution (Substitionsnachweis) compulsory for all
substitution patients, a contract including entries about the sort of
substitute drug, validity period of prescription, dose rate, mode of
distribution, and regulations concerning the take-out dose. Doctors and
pharmacists can be prompted to transmit these detailed histories of therapy
and distribution to the authorities and third parties, with a retention
period of three years. The data are to be processed in a centralised
national register of the Ministry of Health (Article 23j). The attending
physicians have to register all cases of substitute therapy in this index,
including all personal data of patients.

Supporters of the new regulations and the legislator argue that the
amendments and the adopted monitoring control system are thought to result
in a reduction of the misuse and abuse of the issued substances; they want
to prevent Doctor Shopping, multiple prescriptions and illegal trafficking
with prescribed drugs. It is also true that detailed documentation of
therapy will result in improved and more effective therapies with substitute
drugs. According to Dr Franz Pietsch, Austria’s National Drug Coordinator:
“I cannot see any contradiction between our goal to extend our substitution
program and these newly introduced restrictive measures. They have been
called for by many drug-experts and, despite controversial discussions in
this field, constitute a professional and well-balanced consensus.”
What is especially puzzling about these regulations is the obvious and
required incapacitation of patients – and doctors – as a prerequisite to
start therapy. Thus, instead of offering more and easier access to
substitution therapies for already stigmatised addicts, they create even
more obstacles. Haltmayer sums up the consequences: “Fewer addicts in the
clinics, more addicts on the streets. Let’s not forget that the untreated
addict is the biggest threat to self and others.”

Implications for patients are clear: if they do not accept the conditions of
the program, they will receive no treatment. What are the choices? To
describe this as the “patients’ consent to the further use and processing of
their private and sensitive data” is disturbing. Especially substitution
programs have high drop out-rates, and these are going to rise with
increased surveillance. People in need of such programs are understandably
trying not to draw attention to their problems. Now that existing or
potential employers or landlords can access their personal data, chances are
that many addicts will drop out of therapy or never even consider starting
it. What is more, public authorities could refuse certain social services to
people on the grounds that they are registered as substitute drug patients.

There is more trouble ahead concerning the restrictive regulations about
providing patients with substitutes for a period of time (Mitgaberegelung):
patients have to consume the substitutes under the supervision of their
physician or pharmacist on the professionals’ premises on a daily basis.
This makes it hard for addicts to hold down a regular job; exceptions to
this regulation depend on the duration of continuous treatment and an
existing employment or apprenticeship. Despite Dr Pietsch’s statement that
“these restrictive regulations about providing patients with substitute
drugs are not meant to impair the patients’ work-related, housing-related
and social environments any more than necessary”, instead of
providing more and easier access to substitution-therapies they create even
more obstacles for already stigmatised patients.

Physicians find themselves in a predicament as well: left with the choice of
infringing either the Federal Act on Medical Profession or the Narcotic
Substances Act, many Austrian doctors have already dropped out of the
(scarce) substitution programs – which leaves many patients with little to
no chance for therapy, especially in rural areas.

In the run-up to the amendments Dr. Rolf Jens, president of the Vienna GP
Medical Association, pointed out: “It will become impossible for us
physicians to attend to patients in the best possible way according to
medical law and scientific state-of-the-art without violating the Narcotic
Substances Act. To participate in substitution therapies will become
increasingly difficult and extremely risky for physicians.”

Hans-Joachim Fuchs, a practitioner based in Vienna, is preparing to file a
complaint to the Constitutional Court; he doubts the new law is in
accordance with the Austrian Constitution. He said in an interview
with the Austria Press Agency that already over twenty physicians,
patients and relatives were supporting his petition. He is confident that
the Constitutional Court will reach an agreement to revise the amendments or
at least parts of them.

This view is supported by Arge Daten. “We have examined the legal aspects of
the amendments very carefully and come to the explicit conclusion that there
exists absolutely no legal basis for the extensive release from the
physician’s obligation to confidentiality,” says Hans Zeger.

The Austrian Department of Health, however, is not impressed: they argue the
data are recorded, retained and transmitted for the protection and the
well-being of the patients; no revision of the amendments are planned.
Apparently drug addicts in Austria are expected to consider themselves lucky
to receive treatment at all. In essence this fringe group is asked to do
without their basic rights (and who will be next?).

The amendments are only one example in the increasingly bold thrusts into
the enforceability of scurrilous intrusions of basic rights: alarming
harbingers of a system of minimal health care devoid of privacy and human
dignity.

Arge Daten: “Therapy only without Privacy – the new road to a two-class
health care system” (only in German, 17.04.2007)
http://www2.argedaten.at/php/cms_monitor.php?q=PUB-TEXT-ARGEDATEN&s=57945tgw

A huge step backwards for substitution therapies (only in
German, 02.2006)
http://www.medical-tribune.at/dynasite.cfm?dssid=4169&dsmid=73402&dspaid=569886

Plattform Drogentherapie: Framework of the new Narcotic Substances Act (only
in German)
http://www.drogensubstitution.at/expertenmeinung/rahmenbedingungen-der-neuen-drogenverordnung.htm

Amendments to Substitution Therapies: increased surveillance, stricter rules
(only in German, 2007)
http://www.aerztewoche.at/viewArticleDetails.do?articleId=5760

The New Narcotic Substances Act: Worst Case Scenario or a Storm in a Teacup?
(only in German, 2007)
http://www.aerztewoche.at/viewArticleDetails.do?articleId=4212

Substitute therapies abandoned by physicians (only in German, 2007)
http://orf.at/070417-11352/index.html

Narcotic Substances Act condemned by the Vienna Medical Association (only in
German, 17.04.2007)
http://wien.orf.at/stories/186186

Federal Law Gazette of the Austrian Republic; Amendments to the Narcotic
Substances Act (only in German, 1.03.2007)
http://www.sbg.ac.at/ver/links/bgbl/2007b050.pdf

(Contribution by Andreas Krisch, EDRI-member VIBE!AT – Austrian Association
for Internet Users )