Hallo,
hier möchte ich auf die UN-Behindertenkonvention hinweisen. Diese schützt gemäß Art. 1 auch Menschen mit langfristigen körperlichen Behinderungen/impairments, wozu ohne jeden Zweifel auch die Menschen gehören die an einer Krebserkrankung leiden, die nicht soweit als geheilt betrachtet werden kann, dass keine Behinderung besteht. Zum Beispiel im Zugang zu medikamentöser Versorgung. Nach der UN-Konvention besteht ein Recht auf den "Best Standard of Health", und zwar für die Einzelperson. Wenn Campath vielleicht nicht für alle CLL-PatientInnen diesen Standard reprasentiert (weil das in seinem /ihrem Fall eine SZT wäre), so doch für sehr viele. Auch steht einem das Recht der Wahl zu zwischen Behandlungsmethoden, wenn diese nicht medizinisch-ethischen Grundsätzen zuwiderlaufen (meine Meinung). Es besteht nach Art. 12 CRPD jedenfalls das Recht, alle Unterstützung zu bekommen, um die individuelle Entscheidung auch mit der erforderlich gründlichen und umfassenden fachlichen Information im Hintergrund treffen zu können, und der Staat hat Einrichtungen zu schaffen, wo dies ermöglicht wird (Gebäude; Strukturen).
Bekanntlich gibt es nicht nur für Menschen mit einer Querschnittlähmung oder Hörbehinderung sondern auch für LeukämiepatientInnen Behindertenausweise etc..
Betreffend Campath war es die EU-Arzneimittelbehörde, bei der Zulassung und Rückziehung laufen.Dafür gibts eigene EU-Vorschriften. Aber wohl hat Deutschland auch nicht alle Rechte diesbezüglich weggegeben. Die DHL wird das woh l genauer wissen. Also wird man sagen können, dass sowohl Deutschland als auch die Europäische Union in der Lizenzfrage mit/bestimmend sind. Sowohl die EU als auch D sind Vertragspartei bei der UN-Konvention für Menschen mit Behinderungen. D hat zu verantworten, was es im Rahmen seiner Gesetzgebung bestimmen darf. Alle Vertragsparteien meist Staaten, aber auch Staatenorganisationen wie die EU, sind verpflichtet, regelmäßige Berichte an eine UN-Kommittee, das extra zu diesem Zweck eingerichtet wurde, abzugeben. Alle NGOs sind berechtigt, Berichte einzuschicken, die dann auch auf der CRPD-Webseite veröffentlicht und vom Kommittee berücksichtigt werden. Das Kommittee erläßt schleßlich nach der Prüfung Empfehlungen. Diejenigen, die sich hier nicht einbringen, werden potentiell zu wenig beachtet in diesem internationalen Kontext.
Ich schicke daher im Nachhang dieses Postings ein paar Unterlagen mit, für den/die es interessiert, vielleicht hier auch einen Bericht zu verfassen.
Sitzungen sind meist im Oktober und im Februar. Die für Deutschland ist noch nicht festgesetzt.
CLL PatientInnen können durch die Campath -Lizenzzurückziehung in mehrfacher Weise diskrininiert sein: Wie kommen sie dazu, dass ausgerechnet sie auf Medikamente angewiesen sind, die aufgrund der gesetzlichen Freiräume für Pharmzeutische Firmen aus Profitgründen entzogen werden können bzw. der Zugang zu ihnen erschwert wird?
Auch wird das Recht auf Leben zahlreicher PatientInnen in der Praxis bedroht sein. Das gilt es dann auszuführen und einzuschicken, bzw. natürlich noch zu ergänzen und zu ändern, je nachdem.
Grüße, Akita
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Sitzungen des UN-Behindertenkommittes Zeiplan Übersicht.
Der Sitzungstermin für Deutschland ist noch nicht festgesetzt (oben auf der Tabelle)
http://www.ohchr.org/EN/HRBodies/CRPD/P ... sions.aspx
Hier sieht man, dass Deutschland bereits einen Bericht - in englischer Sprache - eingesendet hat, vom 21. August 2011
http://www.ohchr.org/EN/HRBodies/CRPD/P ... sions.aspx
Was hat Deutschland zum Recht auf Gesundheit Art. 25 CRPD zu berichten?
Habs aus dem Text herauskopiert:
Es gibt auch eine deutsche Fassung, doch ist diese keine authentische Übersetzung einer der Originalfassungen. Es haben sich viele Menschen mit Behinderung darüber beschwert, dass durch die deutsche Übersetzung der Sinn entstellt worden sein soll.
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Article 25 – Health
Health support in the Federal Republic is a matter for the Federation, the Länder, the local authorities, as well as health insurance and long-term care insurance. The legal basis is to be found largely in the Social Codes (Book V of the Social Code – Statutory health insurance, Book XI of the Social Code – Social long-term care insurance) and in the Health Service Acts of the Länder.
Statutory health insurance takes on a decisive role in the system of health support. It provides benefits in kind for medical treatment for all insured parties which correspond to the generally-recognised state of medical knowledge and take medical progress into account. This equally applies to persons with disabilities. The Book V of the Social Code contains a separate provision which exclusively places the focus on the interests of persons with a disability (section 2a of Book V of the Social Code). Accordingly, the special interests of persons with disabilities are to be taken into account.
In accordance with Book V of the Social Code, insured parties have a right to the necessary benefits, in particular for medical rehabilitation, in order to avert, alleviate or compensate for a disability or need of long-term care. These also include benefits for early recognition of illnesses for adults, as well as for early diagnosis and promotion of children with a disability and at risk of disability. In accordance with the provisions contained in Book VI of the Social Code, statutory pensions insurance also provides benefits for the medical rehabilitation of children and juveniles in order to remedy a considerable risk to their health or to restore or improve health that has already been impaired.
The early recognition examinations for children and juveniles are being continually refined by the Joint Federal Commission . Since April 2005, the expanded screening of newborns has included an examination for twelve target illnesses. Since 1 January 2009, screening for hearing impairments among newborns has been implemented as a mandatory benefit of statutory health insurance. An additional examination for children aged 3 was introduced in July 2008. The high level of benefits in healthcare for persons with disabilities is to be maintained and refined in a targeted fashion. This relates in particular to the supply of high-quality medicines and medical aids. Here, the Federal Government will examine proposals as to how the supply of medicines and medical aids can be improved, in particular with hearing aids for persons with a disability.
Geographically-accessible out-patient medical and dental care, including in rural areas, is to be achieved by the regulations to ensure the supply of panel doctors (sections 99 et seqq. of Book V of the Social Code) and the guidelines for needs planning issued on that basis. Moreover, further measures have come into force and more are provided for (Supply Act [Versorgungsgesetz] being planned) aiming to maintain and improve medical and dental care in rural areas.
The public health service is responsible for major tasks in the field of health prevention, health promotion, consumer health protection, and health protection on the basis of federal statutes (e.g. Infection Protection Act) and specific regulations under Land law. For children who are chronically ill or have a disability, the public health service frequently takes on a significant role as mediator and exercises a pathfinding role through the network of advisory and care facilities. It advises and supports individuals who need special care in the context of health assistance. Moreover, health offices take on large numbers of medical care tasks on a subsidiary basis for certain population groups; this frequently also concerns persons with a disability.
The associations of persons with disabilities criticise that barrier-free access (for instance for wheelchair users) to medical surgeries and other health facilities is not yet adequate . A survey in the Land Brandenburg revealed that roughly 20 percent of medical surgeries can be reached barrier-free. The goal of the Federal Government is where possible to enable all persons with disabilities barrier-free access to health facilities. Here, the outlook of women and men with disabilities and their specific needs – both in relation to illnesses and to how they are approached, to assistance and to communication – need to be tackled. Together with the Länder and the medical profession, the Federal Government will develop an overall concept for barrier-free medical surgeries or clinics. The goal is to be to make an adequate number of medical surgeries barrier-free in the next ten years. Suitable aids for action such as guidelines for doctors and hospitals will be developed to this end.
With a view to providing access to private health insurance, section 19 of the General Anti-Discrimination Act provides that a disadvantage in concluding a private insurance policy for the reasons named in the General Anti-Discrimination Act, e.g. because of a disability, is not
permissible. Different treatment because of a disability is only permissible if this is based on recognised principles of calculation appropriate to risk, in particular on an actuarially risk evaluation, consulting statistical surveys. From 1 January 2009 onwards, persons with disabilities who are to be attributed to the group of individuals who are to be privately insured have had the possibility to take up private health insurance in the so-called basic tariff. Exclusions of benefits or risk supplements are not permissible in this tariff. The benefits must be comparable with those of statutory health insurance in terms of their nature, scope and amount.
Persons in need of long-term care, including many persons with disabilities, have a right to good long-term care. The guideline of long-term care insurance entrenched in the Book XI of the Social Code is dignified long-term care which aims to facilitate as independent a life as possible, and hence also helps to contribute towards self-determined participation in the life of society.
In the context of the 2008 long-term care reform, measures were taken, in particular for qualitative and structural improvement of long-term care. It should be stressed here in particular that benefit improvements in accordance with the principle of out-patient in preference to in-patient long-term care, as well as diverse structural adjustments by means of which long-term care insurance is adjusted better than ever to the needs of those concerned. What is more, measures were included in order to improve the quality of long-term care, reduce existing shortcomings in quality and bring about transparency in long-term care. What is more, the development and updating of expert standards as a major tool of quality assurance has been legally entrenched in long-term care. If the benefits of long-term care insurance are not sufficient, as a matter of principle there is a right to help for long-term care in accordance with sections 61 to 66 of Book XII of the Social Code vis-à-vis the social assistance institutions.
The term “need for long-term care” is criticised in many cases as being too narrow and related to tasks. This term is currently being examined by the Federal Government. The goal is affordable, suitable and self-determined long-term care that is results orientated.
The Federal Government is seeking to improve the reconciliation of work with domestic long-term care in order to better support caring relatives. Hence, the Federal Cabinet on 23 March 2011 adopted the Draft of an Act on Reconciliation of Long-term care and Work, the main element of which is the Family Long-Term Care Leave Act (Familienpflegezeitgesetz). This Act improves the framework for domestic long-term care of persons in need of long-term care by working close relatives. Employers and workers can hence contractually agree that employees work a reduced number of hours for a period of up to two years (family long-term care leave) for the purpose of long-term care of a close relative and during this time receive a topping up of their remuneration for work as an advance. The amount is topped up by half the difference between the previous remuneration and the lower remuneration amount emerging from the reduction in working hours. Employers can refinance this remuneration top-up through an interest-free loan from the Federal Office for Family and Civil Society Duties. After family long-term care leave, the workers return to the full number of hours, but continue to receive the reduced remuneration for up to two years until the wage advance granted by the employer during the long-term care phase has been worked off. Relatives providing long-term care are hence able to maintain their livelihood and avoid interruptions in their working biography.
The right of self-determination, the right to careful medical treatment, the right to education in the context of healthcare, as well as the right to freely choose doctors and hospitals and other rights of patients (with a disability) are not specifically regulated and codified. The statutory basis can be found inter alia in the law on health, in social law and in civil law. This frequently makes it difficult for patients to enforce their rights. This can be particularly difficult for patients with a disability. Doctors and medical staff also need clarity as to which legal obligations they have. The Federal Ministry of Health and the Federal Ministry of Justice, together with the Federal Government’s Commissioner for Patients’ Rights submitted a fundamental paper on patients’ rights in Germany in March 2011. On this basis, a Patients’ Rights Act (Patienten¬rechte¬gesetz) is to be drawn up in order to make the legal situation for patients more transparent and to improve the de facto enforcement of patients’ rights. What is more, there is provision to enhance the rights of patients with the planned Act, for instance in the transition from in-patient to out-patient care or in relation to treatment errors. These regulations also benefit persons with disabilities.
58 The Joint Federal Committee is the highest decision-making body of the joint self-administration of doctors, dentists, psychotherapists, hospitals and health insurance funds in Germany. It determines in the shape of guidelines the list of benefits of statutory health insurance for more than 70 million insured parties, and hence determines which healthcare benefits are refunded.
59 Information on the accessibility of medical surgeries and other healthcare facilities can be retrieved for instance via the
http://www.einfach-teilhaben.de Internet portal.
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CRPD - Convention on the Rights of Persons with Disabilities
Text of the Convention
http://www.ohchr.org/EN/HRBodies/CRPD/P ... ities.aspx
Status of Ratification, Reservations and Declarations
http://treaties.un.org/Pages/ViewDetail ... =en#EndDec
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Text of the Optional Protocol
http://www.ohchr.org/EN/HRBodies/CRPD/P ... ities.aspx
Optional Protocol
Status of ratification, reservations and declarations
http://treaties.un.org/Pages/ViewDetail ... =4&lang=en
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Article 1 - Purpose
The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
Article 5 - Equality and non-discrimination
1. States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law.
2. States Parties shall prohibit all discrimination on the basis of disability and guarantee to persons with disabilities equal and effective legal protection against discrimination on all grounds.
3. In order to promote equality and eliminate discrimination, States Parties shall take all appropriate steps to ensure that reasonable accommodation is provided.
4. Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present Convention.
Article 9 - Accessibility
1. To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia:
(a) Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces;
(b) Information, communications and other services, including electronic services and emergency services.
2. States Parties shall also take appropriate measures to:
(a) Develop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public;
(b) Ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities;
(c) Provide training for stakeholders on accessibility issues facing persons with disabilities;
(d) Provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms;
(e) Provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public;
(f) Promote other appropriate forms of assistance and support to persons with disabilities to ensure their access to information;
(g) Promote access for persons with disabilities to new information and communications technologies and systems, including the Internet;
(h) Promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.
Article 10 - Right to life
States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.
Article 11 - Situations of risk and humanitarian emergencies
States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.
Article 17 - Protecting the integrity of the person
Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.
Article 25 - Health
States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:
(a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;
(b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
(c) Provide these health services as close as possible to people's own communities, including in rural areas;
(d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;
(e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;
(f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
Article 35 - Reports by States Parties
1. Each State Party shall submit to the Committee, through the Secretary-General of the United Nations, a comprehensive report on measures taken to give effect to its obligations under the present Convention and on the progress made in that regard, within two years after the entry into force of the present Convention for the State Party concerned.
2. Thereafter, States Parties shall submit subsequent reports at least every four years and further whenever the Committee so requests.
3. The Committee shall decide any guidelines applicable to the content of the reports.
4. A State Party which has submitted a comprehensive initial report to the Committee need not, in its subsequent reports, repeat information previously provided. When preparing reports to the Committee, States Parties are invited to consider doing so in an open and transparent process and to give due consideration to the provision set out in article 4.3 of the present Convention.
5. Reports may indicate factors and difficulties affecting the degree of fulfilment of obligations under the present Convention.
Article 36 - Consideration of reports
1. Each report shall be considered by the Committee, which shall make such suggestions and general recommendations on the report as it may consider appropriate and shall forward these to the State Party concerned. The State Party may respond with any information it chooses to the Committee. The Committee may request further information from States Parties relevant to the implementation of the present Convention.
2. If a State Party is significantly overdue in the submission of a report, the Committee may notify the State Party concerned of the need to examine the implementation of the present Convention in that State Party, on the basis of reliable information available to the Committee, if the relevant report is not submitted within three months following the notification. The Committee shall invite the State Party concerned to participate in such examination. Should the State Party respond by submitting the relevant report, the provisions of paragraph 1 of this article will apply.
3. The Secretary-General of the United Nations shall make available the reports to all States Parties.
4. States Parties shall make their reports widely available to the public in their own countries and facilitate access to the suggestions and general recommendations relating to these reports.
5. The Committee shall transmit, as it may consider appropriate, to the specialized agencies, funds and programmes of the United Nations, and other competent bodies, reports from States Parties in order to address a request or indication of a need for technical advice or assistance contained therein, along with the Committee's observations and recommendations, if any, on these requests or indications.
Article 39 - Report of the Committee
The Committee shall report every two years to the General Assembly and to the Economic and Social Council on its activities, and may make suggestions and general recommendations based on the examination of reports and information received from the States Parties. Such suggestions and general recommendations shall be included in the report of the Committee together with comments, if any, from States Parties
Article 40 - Conference of States Parties
1. The States Parties shall meet regularly in a Conference of States Parties in order to consider any matter with regard to the implementation of the present Convention.
2. No later than six months after the entry into force of the present Convention, the Conference of the States Parties shall be convened by the Secretary-General of the United Nations. The subsequent meetings shall be convened by the Secretary-General of the United Nations biennially or upon the decision of the Conference of States Parties.
