Your fight does not end! They approved the four mosquitoes, but they can not afford



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Adamko, Peck, Robko and Jakubko. Small patients suffering from Duchenne muscular dystrophy. They awaited approval of the necessary medication by the Categorization Commission of the Ministry of Health. It happened and the drug was added to the list. However, it has a hook …

We wrote the Four Musketeers fighting the bloody disease. Children still have the chance to conquer Duchenne muscular dystrophy and stop the disease with drugs called Translarna.

They were delighted with the little big win when they learned at the end of last year that the expensive drug, approved for use by the European Medicines Agency, has already been categorized by us. They expected their insurers to reimburse the drug in full, but it would not. So far, the supplement for each of the small boys' families is directly settled.

Source: The Archive of the Four Musketeers

It is unrealistic that parents are financially kidnapped

We contacted a lawyer for the boys, Lucius Bajzo, to tell us how to lead a boy, especially if the long awaited medicine already helps what they have dreamed for so long. However, we have learned that the opposite is true. Although the drug has been approved, the boys can not afford it.

"According to information published on the MZ website, the patient supplement for a package of Translarny, the only drug for Duchenne muscular dystrophy, was fixed at 968.77 euros. For example, Jakubko needs up to three packs per month, which together total € 2,906.31.

This is even bigger for Adam because, carrying his weight, he takes more than one medication pack per month. These are really unlikely numbers that could not be provided by either higher-class families or by ordinary, lower-income Slovak families. Not to mention that two of our boys live with only one parent, "says Lucia Bajz openly to the Four Musketeers.

As she adds, it is impossible for the families of the boys to pay their children a supplement so dear to the drug on a monthly basis. He knows that without the help of donors and good people it will not be easy.

Source: Four Musketeers

Why is a drug so expensive?

We have put this directly to the Ministry of Health of the Slovak Republic.

"We have determined the value of the reimbursement according to what the manufacturer has already provided to the health insurance companies, in the hope that they will be willing to contribute to the costs of this extremely expensive treatment.

However, the pressure that the manufacturer creates does not indicate that he is a patient because he is not willing to compensate the amount of the supplement even though the law allows him to use every possible means to maximize his profit where the patient becomes hostage again " Ms. Zuzana Eliášova, spokeswoman for the Ministry of Health of the Slovak Republic.

But in his words, the ministry continues to discuss with the manufacturer, with the goal of reducing the cost of the drug, which would make it impossible for the patient to pay anything.

"On our side, we continue to negotiate and do everything we can to treat the patient in his or her wallet. That is why we decided to include the drug in the categorization list, although it is intended for a very small number of patients, because we wanted to treatment so that the patient does not depend on the insurance company's decision to approve treatment, what has been so far and in some cases the treatment has already been refused, "added Eliáš.

Source: The Archive of the Four Musketeers

What does the drug maker do?

We also addressed the manufacturer of Translarna, namely its distribution in Slovakia, which is covered by BIOXA Therapeutics, s.r.

"According to the Slovak law, the official price (UUC) is set at the average of the three lowest prices of the product in the European Union That is exactly what PTC Therapeutics International Ltd. has asked for.

The Categorization Commission, made up of representatives of the Ministry of Health, Health Insurance and Experts, in its decision on the amount of reimbursement, refers to the price currently paid by the General Health Company to a patient in the company. exception. This is a price that has been reduced by 10% below the UUC by manufacturer and insurer agreement while Translarna is categorized.

At the same time, the manufacturer has ensured that both the distributor and the pharmacy give up the margins to which they have a legal right. The insurer was fully aware of the fact that it was a temporary reduction in completing this agreement. The Ministry of Health, through its then-public minister, stated that rare drugs would be categorized "automatically," on the basis of which PTC Therapeutics temporarily reduced the price to the lowest in the EU, "explains Jana Meixner of BIOXA Therapeutics.

At the same time, he adds that it is not possible for the manufacturer to permanently reduce the price of the Carrier to such a level that the drug is in the currently determined amount of reimbursement without the patient having to pay. The amount of reimbursement set by the categorization committee of the Ministry of Health is simply too low. The price of Translarna in the Slovak Republic was well below the lowest price in the EU, which is not possible. The Ministry of Health of the Slovak Republic is informed of this, as well as the impact that such a reduction would have on the EU.

"For more than two years, the Trust has refused to pay its Translarna insurers, although the law allows and is aware of the fact that this drug is the only treatment option for children with this disease. During the vote on the payment of Translarna in the land of the Ministry of Health of the Czech Republic, the ZP Trust voted repeatedly against payment for this medicine, "says Meixner.

They are looking for a way to help the Musketeer

Parents of boys suffering from isolated diseased muscles have eyes to cry for now. They can not do anything, just expect their children's conditions to worsen, because if they can not walk, any treatment is unnecessary.

So they need to rely on the help of other people who give them the money or even expect the Ministry of Health to reach an agreement with the drug producer, and eventually it will be possible to buy it at no additional cost.

According to Lucia Bajz, a lawyer for the Four Musketeers, Law 363/2011 in §87a defines the maximum amount to be paid by ZPP patients for a drug surcharge of € 12 per quarter, the amount by which that limit exceeds, the insurer will refund the insured within 90 days after the maturity of the calendar quarter. In their case, however, such a system of subsequent reimbursement of the medication surcharge is unnecessary.

"The system of limitation of participation is based on the assumption that the insurer will continually reimburse the undue payments of the medicines, and the health insurance company can return them to it with a delay of 6 months, always only for the respective quarter.

In this system, the insurer is in fact forced to pay continuously from its own funds for medication over a period of six consecutive months. We really do not want to make sense in this system of surcharges and subsequent repayments, "he explains.

But the fight for the health of the four fighters is still not giving up. According to her, the parents of the boys are very pleased that Translarna, as the only remedy for the congenital disease of their children, has been included in the categorization list, but, on the other hand, the whole situation forces them to raise enough money to treat children.

"At present, we are taking steps to establish a civic association whose mission will be to help families finance and provide comprehensive medical care for children with DMD and raise awareness of the rights of persons with disabilities and their benefits to society," concludes Lucia Bajzová. she described the next path for little warriors to their health.

Our health bill: How we and my son got on alert …

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