A+ A A-

 

  Presentation of

Candidate for 2019 Foundation Board  Elections

Christian Stürmer

Weiherhagstr. 6, 73760 Ostfildern

Tel. +49 (0) 172-793-532

 

 

Fellow survivors,

I am 58 years old, a lawyer, and was born with severe disabilities resulting from thalidomide (known as Contergan in Germany). As chair of Contergannetzwerk Deutschland e.V. and a full member of the Contergan Foundation board (representing the survivors), I have been active and successful in promoting our cause as thalidomide survivors. Most importantly, we have seen an increase in our pension and the payments we receive for specific needs. The vascular study was and still is very close to my heart, but its implementation requires compliance with data protection regulations and the conditions set by the ethics committee.

 

I think having someone with knowledge of the law on the board is important. Since there is still much to achieve, I am once again standing for election to the foundation board, where we representatives of the survivors don't have it easy...

 

"No decisions about us without our input!"

The structures of the Contergan Foundation date back to the 1970s and appear completely outmoded, especially in light of modern disability policy (in particular the UN Convention on the Rights of Persons with Disabilities). Given that modern disability policy, in particular since the passing of the UN Convention, has been characterized by the slogan "No decisions about us without our input!", this reinforces the need for us to have our say with the Contergan Foundation, since the foundation is the interface between the state, Grünenthal, and us survivors and our parents. The foundation functions as the state's indirect administrator for Contergan claims, because the state has been complicit in the thalidomide scandal, too. Otherwise, the state could have tasked various government agencies with disbursing benefits to us. In addition, we too are co-founders of the foundation: not only have funds earmarked for us flowed from Grünenthal into the foundation, but the foundation is part and parcel of a package designed to keep the damage caused by the thalidomide scandal in check when §23 para. 1 of the law establishing the foundation erased all outstanding claims against Grünenthal, its owners, and its employees. The value of this "expropriation" of our rightful, individual claims is our individual contribution to the overall package of thefoundation solution.

Therefore, not only do we have a basic human right claim to participate in decisions affecting us (No decisions about us without our input!), but also a specific, unconditional claim as Contergan (thalidomide) survivors to be treated as equals in the foundation's affairs!

 

Our right to be treated as equals is

being trampled

The chair of the foundation is appointed by the Federal Ministry for Family Affairs, Senior Citizens, Women and Youth and confirmed by the majority of the board also appointed by the ministry. If you think that the survivors' representative on the board is elected by us survivors or at least the appointment would be coordinated with our associations, unfortunately, you are wrong. The foundation chair and the ministry alone determine who will represent the survivors...

This outside influence continues on the foundation's board: the federal ministries have three out of the five seats on the board, while survivors only have two. This means that the representatives of the survivors, a minority by the design of the foundation's structure, end up playing the role of mere extras. These structures have even led to such events as when the ministry's majority on the board voted to change the foundation's articles of association without further ado and limited our rights to information in such a way that any remaining rights, such as they are, would be difficult to enforce. There were many conditions attached to whether we survivors' representatives would receive information, such that it is now simply up to management and/or the ministry to decide whether to give us the information we desire....

It is clear from all this that a fundamental reform of the foundation is absolutely necessary so that our rights of participation and co-determination as survivors are clearly strengthened. This is imperative if we are ever to achieve a satisfactory resolution for Contergan (thalidomide) survivors.

The recently passed amendments to the foundation's articles of association also affect opportunities to exert control over the board, which, in view of past events, I consider to be really bad, as can be seen in the following example:

 

Controversial material about the Contergan scandal

rejected by the foundation!

During 2018 (therefore relatively recently), the heir of a lawyer who had served as counsel for Grünenthal during the Contergan trial came forward. At the time, the lawyer had been so moved by the scandal that he had made private notes and even collected documents, including various affidavits and expert opinions. He had kept these documents until his death.

After finding the documents, the heir asked the Contergan Foundation in 2018 or earlier whether it wanted these files.

 

Can you imagine what kinds of information they held? So much has been kept hidden over the years. To this day, it remains unclear where thalidomide came from. Was it invented in the concentration camps? How did Grünenthal come to own the rights to it? What interest groups collaborated to protect the pharmaceutical industry and Grünenthal? And so forth. And here was someone from the innermost circle at Grünenthal who had collected documents and taken notes, kept these documents for years, and then they were offered by his heir to the foundation..... No doubt, some were

scared at the prospect.....

 

Without the board being told, management under the former Chair Marlene Rupprecht took action. I have a copy of a September 2018 email to a lawyer commissioned by the foundation, who then responded on 7 September and 4 October 2018. Marlene Rupprecht, the chair of the foundation, however, failed to report the existence of the files, the offer to hand them over, or any procedures to review them when she made her report to the board on 5 December 2018.

 

Not a single word! Although it was clear just how important this material could be for clearing up the details of the thalidomide scandal.

At the board meeting held 5 June 2019, after nearly a year of the bureaucratic wheels turning secretly in the background, we representatives of the survivors were finally told of the files for the first time!

I have since been in email contact with the heir, all very friendly and polite. She still hasn't answered me. Because the files were already in Grünenthal's hands....

 

 

What needs to change with regard to authority and the board for the Contergan Foundation?

It is important that we survivors have the majority or at least the same number of seats as the representatives of the government bureaucracy. Then we would truly be able to represent our interests, as I will outline below.

It is also important that the survivor's representative on the management board of the Contergan Foundation be elected directly by the survivors. Shifts of responsibility from the board to management need to be rejected, because, in my opinion, they serve exclusively to eliminate the voice of the survivors' representatives on the board. We need to follow the modern idea of participation in a way that does justice to the history of this scandal!

 

How are we going to handle Grünenthal?

We, and in particular the Contergan Foundation, need to do our best to exert influence on Grünenthal, so that it, following the English model, would also contribute to the payments for survivors. We have still not received adequate compensation for our pain and suffering!! Grünenthal should be responsible for this! This is hardly going to happen on a voluntary basis, but if the foundation pushes the government and we all stand together, maybe something can be achieved. We never could have dreamed that the state would live up to its obligations to us with pensions like ours. If we all pull together, a lot can happen!

I can't imagine that committed Contergan survivors wouldn't expect the foundation to assert their need with the Grünenthal Foundation. After all, that's what's happening with the advisory boards for the homepage editors and the vascular study (I don't belong to either). Every survivor has the unconditional right to claim and receive compensation from the perpetrator! An artificial stigma against Grünenthal exists in order to save money (but whether that's what we really want is another matter....), instead of proactively entering into an alliance with the state on behalf of our fellow survivors:

We should be open to overcoming old notions of who is the enemy. As long as we allowing Grünenthal to hide its head in the sand, things will continue to be grand for this company. We need an alliance between politics, the government, the foundation, and survivors' associations so that we can begin negotiating....

 

 

DEMANDS:

1.) Pensions for relatives taking care of Contergan survivors:

Close relatives have often cared for and nursed Contergan survivors for decades, not going into the workforce to earn their own pensions. After the Contergan survivor dies, these relatives then find themselves facing inadequate protection for their own old age, especially in the form of pensions. Unacceptable! Given the complicity of the state in the Contergan disaster, but also as a matter of legal principle, there is the need for legislative action. After all, under the Act on Humanitarian Aid for People Infected with HIV through Blood Transfusions (HIVHG)(1), but also especially the laws giving social benefits to the survivors of state violence during the Second World War and their heirs(2), comprehensive benefits, especially pensions for survivors, should be granted.

 

 

2.) Standardisation of existing protections: no changes at the survivors' expense!

In order to eliminate uncertainties, the act establishing the Contergan Foundation must stipulate that approved Contergan pensions may not be reduced, with the exception of capitalisations.

It must also ensure that survivors are played against each other: basically, no new benefits for survivors at the expense of other survivors! New benefits or changes to the claims points system may only be made if the state bears the additional costs!

 

 

3.) Significant increase in the payments for specific needs

It has been found that the payments for specific needs are not sufficient, especially for survivors with lower points, who have experienced significant disability due to late-onset and consequential damage. Motor vehicles, other aids, assistance services, therapies, and cures cost a lot of money. Currently, a study is being conducted by the Gerontological Institute of the University of Heidelberg, the results of which will be available in October of this year. These recommendations must then be implemented in a timely manner!

 

 

4.) Benefits per claim point (not graduated!)

Per Appendix 3 of the Guidelines for Granting Benefits in Contergan Claims Cases, the pensions are awarded based on bands of 5 claims points each. By lumping survivors together like this, many are suffering significant losses.

Example: if someone has 14.99 points, they will get exactly as much pension as a survivor with just 10 points, thus ignoring 4.99 points. People receiving a score of 9.99 points or lower receive no pension, regardless of whether significant late-onset and consequential damages develop as a result of the presenting Contergan-related disability.

The situation is similar with other benefits, such as special payments and capitalisations.

A claim for damages is just that and should be accurately reflected in the benefits offered without any trickery!

 

 

5.) Getting rid of the formula for calculating claims points

By applying the formula from para. 2 of Appendix 2 of the of the Guidelines for Granting Benefits in Contergan Claims Cases, thalidomide survivors are being treated extremely unfairly. If a person has disabilities in not just one, but several medical disciplines (orthopaedics, ophthalmology, otolaryngology, and internal medicine), the formula actually reduces the points they can be granted. (3)

If, for example, a survivor has a disability that falls within the purview of only one speciality (possibly "only" internal medicine, but no additional orthopaedic, eye, or hearing damage), then they will be given all of the raw points without any deductions. This is then used to determine their benefits. But if this survivor has a second disability, for example, orthopaedic issues in addition to the internal medicine issues, the formula actually leads to a deduction of points.

Here again: an injury is an injury and should be reflected in the level of benefits.

 

 

6.) Higher points for those with severe limb disabilities

Survivors with several limb disabilities still have considerable unmet need for assistance. Nevertheless, such injuries are often only given a moderate number of points. But these individuals often suffer from late-onset and consequential damages resulting from one-sided postures and abnormal movements. This group of survivors can often barely move without pain and need exorbitant amounts of assistance (mostly around-the-clock), which is often not covered by public funds and long-term care insurance. These situations can also worsen dramatically.This is whyadditional points should be awarded to those with severe limb disabilities.

 

 

7.) Elimination of the restrictions on capitalisation for the Contergan pension:

Because §13 para. 3 ContStifG refers to §73 of the Federal Care Act (BVG), a thalidomide-survivor may capitalise their thalidomide pension before their 55th birthday. This financing option is essential for survivors, especially for larger purchases. Proposed solution:

Eliminate the age 55 restriction on capitalisation by decoupling §13 ContStifG from §73 BVG.

 

 

8.) Option to capitalise payments for specific needs:

Contergan survivors are currently preparing for their senior years and will continue to have significant needs, such as accessible housing, adapted vehicles, etc. These needs are often unmanageable. One solution could be to allow survivors to request disbursement of their annual payments for special needs for up to ten years in advance (capitalisation).

 

 

9.) Inflation adjustments to payments for specific needs, analogous to the Contergan pensions

To ensure that the purchasing power of the annual payments is maintained, they need to be indexed to the inflation rate.

 

 

10.) Acceleration of processes (such as review requests)

Applications whether for review requests or capitalisations often take a long time to be processed. A thorough analysis of the causes and recommendations are need to ensure that all procedures are completed within a reasonable time.

 

 

11.) Exclusion of reimbursement bysocial services after the death of thalidomide survivors (§102 SGB XII):

According to the current legal situation, it is possible for social services to demand reimbursement from the estates of thalidomide survivors, even if they were benefits received through the foundation services.(4)It is well known that the foundation's benefits enjoy far-reaching protection, but it does not extend beyond the survivor's death.(5)As already stated above, the heirs of thalidomide survivors are mostly persons who have taken care of these individuals for decades. This care and assistance have usually happened and still happen in such a way that is disadvantageous to the pensions of the caregivers. As already explained in more detail above, these caregivers do not yet

receive any pension for this service. Under the current state of the law, those who have cared for Contergan survivors face an impoverished old age. One should remember that the state's complicity in the thalidomide scandal and its assumption of Grünenthal's liability imposes a special obligation on the state. The benefits for Contergan survivors are compensatory in nature for the injustice committed against them. Because of all this, it is completely unacceptable that government agencies would demand a refund of sums paid to Contergan survivors under §102 SGB XII, as has been previously allowed by case law. Proposal: an adequate regulation for hardship cases in ContStifG in accordance with §102 III SGB XII.

 

 

12.) Specialist medical centre withattached doctors. Therapeutic network and the problem of "the unprofitable patient"

As is known, the medical care offered to survivors has been completely inadequate, as the Gerontological Institute of Heidelberg University has expressly identified. Therefore, local specialist medical centres to treat survivors need to be set up and maintained with the help of the foundation. These centres must be connected to a network of doctors and therapists. Interested doctors and therapists could receive thalidomide-specific medical information and tips for their treatments.

Furthermore, there is the problem that the fees paid by statutory health insurance in Germany for the medical treatment of thalidomide survivors are too low. This again represents a barrier to attracting qualified physicians to providing treatment to thalidomide victims. For this reason, treating physicians should receive subsidies for this work.

 

 

13.)Democratization of the foundation, including: increase in the numberof survivors' representatives on the board and election of the survivor's management representative by survivors.

 

 

14.) Making videos of board meetings with sign language interpreter and publication on the foundation's homepage!

Many survivors are no longer able to travel. This number will only increase in the future. Due to the history of the thalidomide scandal and the fact that the foundation serves as the interface between the state and survivors, it is very important for survivors to know what is going on at the foundation and the discussions held by the board. Many survivors also need more time to understand content due to their disability. That is why posting a video recording of board meetings is not only appropriate, but also necessary in the sense of the UN Disability Rights Convention.

 

 

15.) No deductions from the pensions for survivors outsideGermany

For survivors outside of Germany, it is urgently necessary to check whether the foundation's offsetting of benefits they receive from their states is allowed. In states where the purchasing power is lower than in Germany, a direct offset is simply not appropriate. Immediate action is needed here!

 

16.) Exercise of technical and legal supervision by theFederal Ministry of Labour and Social Affairs

Thematically, Contergan (thalidomide) has more to do with the remit of the Federal Ministry of Labour and Social Affairs. After the controversies with the way the Federal Ministry of Family Affairs has handled this, a change of responsibility to the Ministry of Labour and Social Affairs would offer the chance of a new beginning.

 

 

If elected, I will work with both the ministry and the foundation in the interests of us survivors. That would not change my positions, which I clearly hold, but am also willing to discuss. I do not want to fight for the sake of fighting, but, if possible, find constructive solutions together as equals. Hope dies last, but maybe a change of government will help ....

I thank all my supporters. The more there are, the more impact I can have!

Best wishes to you all,

Christian Stürmer

Footnotes:

  1. - HIV-Hilfegesetz – HIVHG http://www.gesetze-im-internet.de/hivhg

 

  1. - Soziales Entschädigungsrecht: BVG, SVG, HHG, OEG IfSG, VWRehaG -http://www.bmas.de/DE/Themen/Soziale-Sicherung/Soziale-Entschaedigung/uebersicht-gesetze-soziales-entschaedigungsrecht.html;jsessionid=A773531AABD1AA263A377638D24CF160

http://www.contergannetzwerk.de

/Memorandum_nach_dem%203._Conterganstiftungs%C3%A4nderungsgesetz.pdf


Wir in Sozialen Netzwerken

FacebookMySpaceTwitterDiggDeliciousStumbleuponGoogle BookmarksRedditNewsvineTechnoratiLinkedinMixxRSS Feed
@ Contergannetzwerk Deutschland e.V. - alle Rechte vorbehalten!

Login or Register

LOG IN

Register

User Registration
or Abbrechen