Multiple sclerosis and medication discrimination

As a Multiple Sclerosis patient, you also experience medication discrimination, especially in the Netherlands. Where many countries pay for stem cell therapy, which can completely suppress the progression of MS, this therapy is still not paid for here.

What is Multiple Sclerosis (MS)?

Multiple sclerosis usually starts from one day to the next. Physical issues that everyone can have at one time or another do sudden not disappear anymore. You can suffer from immense fatigue that does not go away, sometimes you suddenly have double vision, what comes more often and lasts longer. A joint that suddenly works differently, muscles that are stiff and lose strength. These can all be signs of Multiple Sclerosis (MS).

MS is a chronic inflammatory disease of the central nervous system (CNS) that affects young people and adults and leads to demyelination (see below) and neurodegeneration. The disease is significantly more common in women, in whom the incidence is two to three times higher than in men. Differences between men and women include:

• an earlier onset of the disease and frequent relapses in women;
• a more rapid progression;
• poorer results in men.

Scientific research shows that hormone-related physical conditions in women, such as puberty, pregnancy, puerperium and menopause, also have a visible influence on both the frequency of diagnoses of the disease and the outcomes. Hormonal and/or genetic factors are therefore thought to be involved in regulating the course of the disease. For example, some lifestyle and environmental factors such as intolerant foods, low levels of D3 in blood or an improperly functioning microbiome may influence endogenous sex hormone levels. These then alter the hormonal interaction with MS susceptibility genes. Understanding these molecular mechanisms may contribute to the development of new and safer treatments for both men and women.

Autoimmune disease

Multiple Sclerosis (MS) is generally considered an autoimmune disease, the exact cause of which is not yet clear in conventional medicine. It is an inflammatory disease of the brain and spinal cord, together called the central nervous system.

Your immunity attacks the body’s own substance, myelin. Myelin is the insulating layer around nerve fibres. This process is called demyelination. Inflammation with associated demyelination and damage to the nerve fibres are the main mechanisms causing symptoms in MS. The nerve fibres that have the function of passing on signals from the brain to other parts of the brain etc. can do this less well. This is because the myelin around that nerve is damaged. The inflammation can eventually turn into scar tissue (sclerosis). The amount of (multiple) sclerosis determines how much and what kind of symptoms someone gets. It therefore depends on the number and location of inflammations and areas of scar tissue. The symptoms usually start between the ages of 20 and 40.

Researchers think that the immune system in people with MS is more sensitive. As a result, the system reacts too quickly and too violently, destroying the myelin. Epigenetics tells us there are many lifestyle reasons why the immune system reacts so quickly and too violently.

What are the symptoms of MS?

MS progresses differently in each patient. This makes it difficult to recognise the condition. The different functions of the body are controlled by the brain. Inflammations in the brain cause these functions to malfunction. But which functions are affected can differ from person to person. It can cause all kinds of symptoms:

• You are often very tired;
• Difficulty speaking;
• You have blurred or double vision;
• Muscle pain and loss of strength;
• You may also have problems with your balance;
• Feeling tingling or sleepy body parts;
• You have problems going to the toilet; constipation is common, but also incontinence;
• Problems with concentration, memory and attention;
• Difficulty feeling cold and heat.

When diagnosed with MS, you often suffer from at least one function that no longer works properly because of inflammation. Sometimes this is temporary, sometimes it lasts longer. Sometimes several functions are affected at the same time. How often and how much you suffer depends on what type of MS you have. MS can be divided into three categories:

• MS with attacks and recovery (RRMS);
• Multiple sclerosis (MS) with no attacks (SPMS);
• MS with worsening of the symptoms (PPMS).

RRMS is the most common (Relapsing-Remitting Multiple Sclerosis. Here you have attacks with symptoms that are referred to as a relapse. This is a mild form of MS because months/years can sometimes pass between attacks. In between attacks, you have little or no symptoms. Eventually, after years, this form can also be seriously debilitating.

What does stem cell therapy do for MS?

Stem cell therapy can be seen as a reset for your immunity. Stem cells from your own body are used to ensure that your immunity no longer causes inflammation. Chemotherapy kills the maladjusted immune cells and patients are then given back the stem cells taken from their own blood. These stem cells contain the genetic codes of how a properly functioning immunity should be built up. These stem cells should ensure that the new immunity no longer attacks the nervous system.

It works as a kind of reset and has been seen in many countries as an effective remedy against the progression of MS. In recent years, there has been a lot of attention for stem cell therapy for patients with MS. In the Netherlands, scientists are much more reluctant to use stem cell therapy. Despite the fact that many neurologists and patient associations are urging insurers to reimburse patients for this therapy, this has not yet happened. Many patients therefore go abroad to undergo this invasive therapy. They have to scrape together large sums of money themselves in order to be reimbursed. Why is it reimbursed in many other countries and not in our country?

Written scientific research shows many positive studies on stem cell transplantation

It has recently been shown that grafted cells from different sources including mesenchymal stem cells, neural precursors and stem cells and induced-pluripotent stem cells, can repair central nervous system injuries caused by MS and functional neurological deficits. The results of ongoing studies on autologous haematopoietic stem cell therapy (aHSCT) with the benefit of peripheral administration to patients have suggested that cell replacement therapy may also be a viable option for the immunomodulatory treatment of MS.

In addition to this research, there are numerous positive studies to be found. It is hard to understand why Dutch insurance companies are so reluctant to do this. Dutch neurologists also remain reticent. They first want to see proof that a risky transplant really works better than the new drugs that have come onto the market in recent years. In scientific studies, the answer has always definitely been ‘yes’. At the moment this is also being investigated in a European context with the cooperation of the Amsterdam UMC.

For a group of patients who have exhausted all treatment options, there seems to be hope on the horizon

Health insurers are currently considering whether stem cell therapy should be made available to this group after all. This would be a small group of patients for whom the normal medications do not work and who have not yet deteriorated too much. There must be a central treatment point in the Netherlands that also serves as an expertise center. Here, only the most distressing cases for which no other solution can be found are entitled to this therapy.

In recent years, around 200 Dutch people have undergone a stem cell transplant in a foreign clinic

The National MS Fund and MS Research Foundation endorse the position of the Dutch Neurology Association (NVN), which was revised on 23 May 2022. The NVN states that stem cell therapy (aHSCT) should be made available to a specific group of people for whom medication does not work. “It is very distressing that in countries around us, treatment for this group has been offered and reimbursed for years, except in the Netherlands.”

We think so, too! The worry and money stress that these patients often have, because everyone wants a chance at a full life, does not seem to benefit in this disabling disease. It cannot and should not be the case that when scientific research shows that there is a lot of progress and recovery, especially in the RRMS group, in the Netherlands patients are denied this by all kinds of excessive regulations. We all know that this is mainly caused by material motives of the insurers. Read our article about other issues and medication refusal by insurance company CZ. https://xcodexfoundation.com/articles/discrimination-by-health-insurance-companies-part-i/ and https://xcodexfoundation.com/articles/discrimination-by-health-insurance-companies-part-ii/

Just think!

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