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European Patients Rights Day is still needed in view of violations in Spain and other EU countries

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On April 18th the European Patients’ Rights Day is celebrated, which is the annual recurrence that celebrates patients’ and civil society organisations in their efforts to advance patients’ rights at the global and European level.

The European Patients’ Rights Day was created by the Active Citizenship Network to inform, discuss, and take commitments to improve patients’ rights in Europe and in each Member State.

European Patients’ Rights Day complements the mission of many practitioners and civil society organizations to advance the interests of patients and patients’ communities by increasing the awareness of human rights and specifically patient’s rights while strengthening their collective impact across Europe through effective advocacy, education, empowerment, exposing any all sorts of abuses, and of course, creating partnerships.

Patients rights are still not completely upheld everywhere and many european countries still have laws that violate the convention of the rights of people with dissabilities, by allowing or even authorizing through courts, involuntary medical treatments and involuntary commitments, as it is the case of a 30 years young Spanish citizen, being held in the Provincial Hospital Santiago de Compostela (Conxo), against his will and apply electroshocks against his will (as many as 9, and which in this context could be considered torture by the WHO and the UN) and without the consent of the family.

There are quite some groups around Europe that fight for the rights of the patients and here you can find a few of them who putsa spotlight on patients’ voices.

European Patients’ Forum

The European Patients’ Forum is the leading voice of patient organisations in Europe. What defines and drives our vision?

We lead patient advocacy in Europe providing a cross-disease perspective from a wide patient community to the policy-making process on issues which have a direct impact on patients’ lives.

ELPA

ELPA strongly believes that patients’ rights will be improved in Europe and beyond, transforming patients’ traditional role from mere targets and users of health services to active citizens participating in the healthcare crafting. Patients should be more involved in assessing and evaluating health care systems, participating in policy-making processes, designing clinical trials, drafting medical information.

Global Heart Hub

“In the case of diagnosed severe aortic stenosis, delayed treatment can be life threatening – so patients have a right to be treated on time with the best available treatments. In 2021, the Global Heart Hub commits to raising awareness of these rights”

Neil Johnson Director of Development, Global Heart Hub

EATG

Criminalisation of key populations groups affected by HIV/AIDS and co-infections is a key obstacle to an effective response. In 2021, EATG is committed to scale up advocacy for these key populations whose rights are overridden, particularly in Central Europe and the EECA region (Eastern Europe and Central Asia).

CCHR

This is a human rights watchdog organization on the field of mental health, exposing abuses in the fields of psychiatry, and advocating for the eradication of laws that permit psychiatric abuses. The first organization of its kind was founded in 1969 in the United States, and they now have over 200 sister organizations in 34 countries. The European chapters often contribute to consultations at the UN and the Committee on the Rights of the Child. They also recently achieved a major victory for patients’ rights on a case in which the Spanish Society of Psychiatry did not want CCHR to document, expose or criticise the abuses committed in the field.

Dmd Aileleri Dernegi

Disabled patients needs to be provided not only equal but also fair rights!

“I felt myself disabled when I could not enter school with my wheelchair because of ineligible enterance, not when I lose my ambulation”

“I felt myself disabled when I could not use public transportation with my wheelchair because of ineligible vehicles, not when I lose my ambulation”

“I felt myself disabled when my wheelchair was broken, not when I lose my ambulation”

EUROPA DONNA

All European Patients have the right to equal access to treatment and diagnosis no matter where they live. This is one of the 10 key overarching rights of the European Code of Cancer Practice which aims to inform and assist patients at all stages of their cancer journey. EUROPA DONNA- The European Breast Cancer Coalition supports the Code and commits to continue advocating for patients’ rights as we have done for more than 25 years.

WFIPP

WFIPP has a project called World Continence Week taking place 21st to 27th June. The aim is to help raise awareness of incontinence and other pelvic floor disorders. In doing so, we hope to engage patients via our newly launched Digital Platform Support in Continence, a web/based tool as a blueprint for patients and their families and healthcare professionals alike. This will help improve patients’rights in Europe and beyond.

ARAM

ARAM is already very active at the European level on behalf of its members. It joins other European organisations to ensure that common issues experienced by patients in other European countries as well, will be addressed at the European level to ensure that patients’ rights are respected everywhere. Fairer and healthier for everyone or none at all!

Malta Health Network

They continue to advocate for the rights of family caregivers of severely mentally ill persons to be recognised by the mental health care system as partners in care and for mentally ill persons with disabling conditions to access the same rights to welfare benefits as persons with a disability. They continue to enable survivors of domestic violence to access peer mentoring support so that they too accompany other survivors in their journey towards resiliency, healing and a better future.

EURORDIS

In 2021, EURORDIS-Rare Diseases Europe commits to assisting European Union institutions to develop a new EU Action Plan for Rare Diseases, which will lead to improved policy and a better future for the 30 million people living with a rare disease in Europe. They continue to advocate for the adoption of a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease to protect and promote the rights of persons with rare diseases worldwide.

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Health & Society

Female circumcision in Russia – exists and is not punished

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Every year, millions of women and girls in the world are subjected to the procedure “female circumcision.” In the process of this dangerous practice, women have part or all of their external genitalia removed. Among the victims are also residents of the North Caucasian republics of Russia, and the Russian authorities do not punish the execution of the violent procedure.

How this violent religious-ritual tradition exists in modern Russia, do the authorities and the clergy try to fight it – reveals the Russian publication of Verstka.

What is “female circumcision”

Female circumcision is a procedure that is accompanied by either trauma or partial or complete amputation of the external genitalia. As a result of the procedure, sensitivity is reduced and the woman may lose the ability to have an orgasm.

Not for medical reasons

The procedure is not performed for medical reasons, but for ritual or religious reasons to suppress female sexuality. That is why in the international medical community this term is not used, but is called “female genital mutilation operations”. International law considers them an attack on the health of women and girls, a form of violence and discrimination.

Victims

Victims of female circumcision are girls up to the age of 15. According to data from the World Health Organization (WHO), in 2024, more than 230 million women in the world suffered from such operations. They are mostly carried out in African, Asian, Latin American and Middle Eastern countries. But there are also victims of female circumcision in Russia among the residents of the North Caucasian republics – Dagestan, Ingushetia and Chechnya.

Injuries

The procedure has serious negative consequences for women’s health – from serious injuries to death due to blood loss. In addition to physical trauma and the shock of pain, female circumcision disrupts the natural functioning of the body. Women and girls may suffer from infections, their genitourinary system may be damaged, they may experience pain during sexual intercourse, menstrual disorders may occur, and the risk of complications during childbirth and death of the mother and the newborn increases by 50%.

Why do they do it?

The “necessity” of such operations is justified by honoring traditions or religious motives. In some cultures, it is part of the rite of female initiation or entry into adult life. Female circumcision is often associated with Islam, including in the Russian Federation.

Prevents lust

In the words of Dagestan journalist Zakir Magomedov, “in the local religious press, which is issued by the official clergy, articles are published in which it is written that female circumcision has a beneficial effect on a woman and protects her from lustful thoughts and desires, and is even beneficial for a woman.”

Female circumcision is performed by people without medical training, and old pocket knives or cattle shears are used as tools.

Control over female sexuality

In almost all cases, the purpose of the procedure is defined as control over female sexuality: “not to be hoika”, “not to freak out”. The official clergy of Dagestan include female circumcision in religious duties, although it is not mentioned in the Koran. Some Muslims, in addition to the Koran, are also guided by the Sunnah – traditions from the life of the Prophet Muhammad and statements of authoritative religious figures. Therefore, in some cases, female circumcision among Muslims can be interpreted as permissible, desirable and even mandatory.

Officially, the Russian authorities are against it

“All women should be circumcised so that there is no debauchery on Earth, to reduce sexuality”, this is how the head of the Coordination Council of Muslims of the North Caucasus, Ismail Berdiev, reacted to the revelations of the “Legal Initiative” organization in 2016, which confirmed the existence of practice. Later, Berdiev clarified that “he did not call for female circumcision”, but only spoke about the “problem of debauchery”, with which “something must be done”.

The Russian Ministry of Health condemns the procedure, and the prosecutor’s office of Dagestan conducts an investigation and finds no confirmation of the facts presented in the report of “Legal Initiative.”

The deputy of the State Duma from “United Russia” Maria Maksakova-Igenbergs proposes to introduce the concept of “women’s discrimination on religious grounds” into the Penal Code, and that the punishment for “female circumcision” be 10 years in prison. The Ministry of Justice of Russia does not support Maksakova’s initiative, clarifying that the procedure falls under the Criminal Code of the Russian Federation, and more precisely under the paragraphs on “deliberately causing severe, medium and light harm to health, as well as causing harm to carelessness.”

North Caucasus

According to the “Legal Initiative” organization, in the middle of the last decade in Dagestan, at least 1,240 girls were subjected to the procedure annually. The majority of the men surveyed were categorically against the ban on female circumcision, explaining their motive not only with Islam, but also with local traditions and the desire to control the morality of women. Part of the respondents expressed an opinion against the procedure, arguing that the lack of sensitivity in women lowers the quality of sex in men as well.

And in Moscow

In 2018 one of the Moscow medical clinics announces the service of “female circumcision” for ritual and religious reasons for girls from 5 to 12 years old. On the clinic’s website, it was noted that “the operation should be performed not at home, but in a medical clinic.” After a wide public response, the clinic removed the information from its website, but an investigation was carried out, which found the existence of the procedure and other violations. A warning has been issued and the clinic is still open!

First conviction without penalty

Despite the fact that in its second report the organization “Legal Initiative” notes the disappearance of the practice in Chechnya and Ingushetia, the inhabitants of these regions remain in danger. In the spring of 2020, the father of a 9-year-old girl invited him to Magas (the capital of Ingushetia) for a visit and took him to a vaccine clinic. There, female circumcision was forcibly performed on the child. The value of the “service” is 2000 rubles. The little girl, in her bloodstained dress, was then put on a bus back to Chechnya, where she was hospitalized for severe blood loss. The father explains his motive as follows: “So that he doesn’t get excited.”

A criminal case has been opened against the gynecologist who performed the circumcision for intentionally causing minor harm to health. The case has been going on for a year and a half. The judge called on the parties to reconcile, adding that “the girl cannot be helped anyway”. In the end, the doctor was found guilty and fined 30,000 rubles, but was released from serving the sentence due to the statute of limitations. No criminal proceedings have been initiated against the clinic.

In the same year, the mufti of Dagestan issued a fatwa and recognized the removal of the external genitalia as forbidden in Islam, but clarified that “female circumcision” meant only hudectomy — the removal of the foreskin of the clitoris. This is also a crippling procedure, human rights defenders insist.

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Health & Society

Four executed for producing illegal alcohol in Iran

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Iranian authorities have executed end of October four people convicted of selling illegal alcohol, which poisoned and killed 17 people last year. More than 190 people who consumed the dangerous drink were hospitalized.

The death sentence against the accused in the case was carried out in the Karaj Central Jail.

According to human rights organizations including Amnesty International, Iran carries out the highest number of executions per year after China.

After the Islamic Revolution in 1979, Tehran banned the production and consumption of alcoholic beverages. Since then, the sale of illegal alcohol on the black market has flourished, leading to mass poisonings. The latest case, reported by Iranian media, has killed around 40 people in northern Iran in recent months.

Only Iran’s recognized Christian minorities, such as the country’s Armenian community, are allowed to produce and consume alcohol, but discreetly and only at home.

Illustrative Photo by Amanda Brady: https://www.pexels.com/photo/elegant-champagne-coupes-in-sunlit-setting-29157921/

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What is food neophobia – the fear of trying new dishes

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Everyone has heard of anorexia and bulimia. But these eating disorders are far from the only ones.

There are people around the world who can only eat certain colored foods. Still others are addicted to water. About 5% of women between the ages of 15 and 35 are affected by some type of eating disorder. Among them are those with neophobia – the inability to try a new type of food. This problem sometimes also affects young children. For them, experts advise parents not to force them, but to explain to them the benefits of a given product. It is also an option to put them on the table in the company of other children who will set a good example.

Neophobia usually disappears around the age of 6. For some people, however, it remains a problem for much longer.

A possible explanation for this condition could be something happening in the person’s life – like choking on food, for example. As a result, a person may begin to avoid a certain type of food and thus give his phobia a “field of expression”.

The reasons for neophobia may lie not only in the psyche, but also in physical features. This disorder is genetically transmitted.

Illustrative Photo by Chan Walrus: https://www.pexels.com/photo/white-and-brown-cooked-dish-on-white-ceramic-bowls-958545/

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