The Deutsche Arbeitsgemeinschaft niedergelassener Ärzte in der Versorgung HIV-Infizierter e.V. (German Association of Practising Physicians Treating HIV-infected Patients – DAGNÄ) was founded in 1990 in Aix-la-Chapelle by Dr Jörg Gölz, Dr Hans Jäger and Dr Heribert Knechten as a non-profit association providing comprehensive, nationwide support to all practising HIV medical specialists and their patients in all stages of the disease.

DAGNÄ e.V. is a network of currently about 300 full members (largely specialists in internal medicine, general practitioners and representatives of other professional groups), regional groups and some 2,000 medical specialists, who are regularly provided with current information. Almost all HIV specialist centres and more than 50% of doctors already belong to DAGNÄ e.V., whose membership therefore treats a large portion of the HIV-infected population.

DAGNÄ e.V. provides extensive further training measures in all scientific areas having to do with HIV infection and promotes the HIV-related scientific work of its members.

Aims and tasks

DAGNÄ e.V. aims to maximise the effectiveness of health care for HIV and AIDS in Germany, taking in account changes in symptoms, improvements in diagnostic and therapeutic options, and social and legal changes. To this end, DAGNÄ e.V. promotes cooperation among the various medical specialist fields and supports collaboration between physicians and the relevant institutions in the health service by providing an ongoing flow of information and assuring quality standards through HIV agreements and therapy guidelines.

DAGNÄ e.V. provides extensive further training in all scientific fields related to HIV infection, especially by holding and documenting events at local, regional and national levels.

DAGNÄ e.V. also promotes the HIV-related scientific work of its members, in particular by initiating scientific studies and evaluations that focus on health care research and examine medical issues facing HIV cohorts.

Health policy

In cooperation with other AIDS societies, it has prepared a number of guidelines, such as the German-Austrian recommendations on antiretroviral therapy of HIV infections, on HIV therapy during pregnancy, and on the diagnostics and treatment of HIV discordant couples who wish to have children.

At the initiative of DAGNÄ e.V., both on its own and in cooperation with other institutions, many health-policy milestones have been reached:

• Extension of the list of criteria for ‘provision for the chronically ill’
• Extension of the OTC list of medicines to include essential HIV therapeutics
• Positions on the off-label issue in HIV
• German guidelines on adherence
• Certification for HIV specialist practices
• Approval criteria for specialist practices
• Health training for patients
• AIDS case fee supplements in several federal state associations of panel doctors
• Viral load determination in the EBM (uniform value scale for doctors’ fees)
• Resistance testing in the EBM
• National and European guidelines and compendia
• Comprehensive HIV advanced training capacity
• Therapy recommendations on various HIV associated illnesses

Quality Assurance Agreement on HIV/AIDS

Qualitätssicherungsvereinbarung zur spezialisierten Versorgung von Patienten mit HIV-Infektion/Aids-Erkrankung gemäß § 135 Abs. 2 SGB V (Quality assurance agreement on specialised medical care of patients with HIV infection/AIDS disease under Section 135(2) of Social Code Book V)

When untreated in humans, infection with the HI virus leads to a “secondary immunodeficiency”, also known as Acquired Immune Deficiency Syndrome - AIDS. In connection with this, unusual “opportunistic infections” and tumours arise, resulting in death if untreated.

With the help of antiretroviral therapy (ART), this immunodeficiency can be treated effectively today.

ART calls for close cooperation between doctor and patient. The physician can detect side-effects and therapy failure through regular supervision of therapy and provide appropriate treatment. The patient must also be able to identify signs of side-effects and therapy failure and be fully relied upon to take the agreed medication on a very regular basis.

Due to the high level of specialisation needed in the different aspects of treating HIV patients, specialist HIV practices have been established nationwide for the care of HIV-infected patients. Within a trusting relationship with permanent advisors, these facilitate not only the provision of medically expert consultancy services and care but also cover psychological and social aspects and access to new medicine and research.

In order to continue to ensure conformity of these nationwide, specialist facilities to uniform quality standards, the partners have subscribed to national collective agreements to introduce a quality assurance agreement for the specialist care of patients with HIV infection/AIDS disease (“Quality Assurance Agreement HIV/AIDS”) under Section 135(2) of SGB V.

This agreement defines quality assurance measures for the care of patients with HIV infection/AIDS disease through “physicians in charge”. It came into effect on 1 July 2009, concurrent with the inclusion of case fee items 30920, 30922 and 30924 in the new Chapter 30.10 “Leistungen der spezialisierten Versorgung HIV-infizierter Patienten (Special health care services for HIV-infected patients)” in the uniform value scale for doctors fees (EBM).

Research projects

HIV research and specialist practices

Due to localised care in HIV specialist practices in Germany, clinical AIDS research has developed differently from that in countries such as the United Kingdom and France, where patient care and research are usually the province of large clinical, university centres.

Research takes place where the patients are. As a result, in Germany, a considerable part of national and international clinical studies are conducted at HIV specialist practices of diverse sizes. Specialist practices were, for example, involved in important clinical trials for Raltegravir (Isentress) and Maraviroc (Celsentri).

Research is of course conducted in conjunction with clinical facilities and basic research institutions. This form of research structure has proved effective.

It is regrettable that clinical AIDS research receives only minimal state funding in Germany. As a consequence, important investigator-initiated studies receive most of their financial support from the pharmaceuticals industry.

In contrast to France and above all the USA, for example, where substantial public funding is allocated to clinical AIDS research, this situation calls for critical attention and continual reappraisal.

Since the foundation of DAGNÄ, smaller, medium-sized and large-scale research projects are continually carried out, initiated by the DAGNÄ board – often at the suggestion of members –. Examples of this are the ART96 study begun in the mid-1990s and the AcDag and PrimeDag studies on acute HIV infection that were presented as oral “late breakers” at CROI 2007 (Koegl C. et al 1,2), and the ongoing studies “50/2010 – Die ältere Patientin / Der ältere Patient (The older female patient / The older male patient)” and “K3A – Krankheitskostenkohortenanalyse (Patient cohort costing)”.

Well over 30 centres in Germany and some in Austria as well have collaborated and continue to collaborate in each of these studies. Several hundred patients – over – of age are involved. They deserve special thanks.

Link

Contact

DAGNÄ e.V.
Geschäftsstelle
Perleberger Str. 27
10559 Berlin
Germany

T +49 30 398 019-30
F +49 30 398 019-320
verein@dagnae.de