Stem Cell Therapy, hope for special needs parents. Please hear our voice!

 

Parent Petition: To the Hon. Prime Minister Shri Narendra Modiji and the Hon. Health Minister of India, D. Mansukh Mandaviya
As well as to:
Secretary (Health & Family Welfare), Director General of Health Sciences (DGHS), Secretary (DHR), Drugs Controller General of India (DCG(I))
And:
National Medical Commission (NMC)

We are a group of parents and caregivers of children with special needs who are requesting the Hon. Prime Minister of India as well as  the Hon. Health Minister to allow continuation of stem cell therapy for treatment of Autism and other disabilities. For us parents stem cell therapy is the only hope that we currently have to bring about improvements in our children and lead independent lives. Indian doctors have shown leadership in this field as is evident by the fact that the world’s first scientific paper on cell therapy in autism was published from India and in addition the maximum number of papers in medical journals on this topic are from India. Thousands of families from all over the world have been coming to India over the last 15 years to take this treatment for their children and have been very satisfied with the improvements in their children after stem cell therapy. India is now a global leader in stem cells. The 6th Annual Con­fer­ence of the Indian Soci­ety of Regen­er­at­ive Sci­ences was held in New Delhi recently. https://www.pressreader.com/india/hindustan-times-gurugram-city/20230430/281943137202889

Unfortunately, over the last few months, a Lutyens lobby comprising of people from vested commercial healthcare field working in connivance with bureaucrats have been making attempts through coercive measures to stop this treatment from being available to us. In this whole debate the voices of the main stakeholders i.e. us common people and families whose children suffer from Autism and Cerebral palsy have not been heard.

This petition is an attempt to make the voice of the common person be heard at the highest level. The Hon. Prime Minister of India Shri Narendra Modiji has always been a big supporter of work in the field of stem cells and has always been committed in his care and concern for the Divyang of the country. We parents are convinced that once the Hon. Prime Minister learns that children with Autism and other disabilities benefit greatly from stem cells, he will realize that Indian doctors have played a leadership role in this field. He will not permit this Lutyens coterie of commercial interests and government officials’ attempts to stop the progressive and innovative work in this field. 

We wish to highlight to the Hon. Prime Minister as well as Hon. Health Minister that there is a very simple actionable solution to our problem that has already been finalized a year ago by your government and is awaiting a final approval. The solution is as follows: In January 2022, the Ministry of Health and Family Welfare along with the Director General Health Services (DGHS) has already finalized “List of practices and procedures involving cell or stem cell based preparations for therapeutic purposes as identified by experts” along with a SOP in which Autism and Cerebral Palsy have been included as a clinical option for treatment using bone marrow derived stem cells. However, this Lutyens lobby with certain government officials have not permitted the release of this List for over a year and even presently are making attempts to remove Autism and Cerebral Palsy from this already prepared list. We therefore request that this above list which has already been prepared by the Health Ministry be approved and released to the public so that hospitals and doctors all over the country can offer stem cell treatment to children with autism, cerebral palsy and other disabilities. 

The birth of a child brings feelings of tremendous joy and happiness in parents' lives, however  the news that their child has a neurological disorder and disability brings devastation, confusion anxiety and stress. A neurological disability affects not just the child but the entire family. Parents experience many emotional, physical, social, financial and other stresses. 

We have taken our children with special needs to various rehabilitation centres and pediatric doctors for years, but our children have not shown any significant improvements. It is only after stem cell therapy that several of our children with autism who could not speak have started talking, children who could not read or write earlier have started going to schools and many of their intellectual and behavioral problems have resolved so that now they can lead normal lives. Several of our children with cerebral palsy who were wheelchair bound and unable to move their hands and legs and now wheelchair free, started walking independently and are able to use their hands for daily activities, so that now they can lead independent lives. 

It is surprising that while, on one hand, families from all over the world are traveling long distances to come to India to benefit from the skills of Indian stem cell therapy doctors, and hospitals and Indian doctors have published the largest number of scientific papers on this subject, on the other, there is a Lutyens lobby of a group of commercial interests and government officials who are spreading a negative and false narrative and attempting to take coercive actions against these hospitals and doctors and stop this path breaking work. We are sure that once this is brought to the attention of the Hon. Prime Minister of India and Hon. Health Minister they will ensure that stem cell therapy treatments for autism and cerebral palsy are allowed to continue so that our children can continue to get the benefits of this treatment by the simple actionable solution of releasing the already prepared by the Health Ministry “List of practices and procedures involving cell or stem cell based preparations for therapeutic purposes as identified by experts”

It would be inhuman to deprive a child with autism or cerebral palsy, this wonderful simple and safe treatment option to lead independent lives. It would be morally incorrect to take away from us families this opportunity to see our children recover from their disabilities with stem cells and become part of mainstream lives. 

The right to health is our fundamental right of our children and we request the Hon. Prime Minister, Hon. Health Minister, Secretary (Health & Family Welfare), Director General of Health Sciences (DGHS), Secretary (DHR), Drugs Controller General of India (DCG(I)) and National Medical Commission (NMC) to not take away this fundamental right from us by ensuring that stem cell therapy is available for our children with autism, cerebral palsy and other disabilities.  

Please stand with us and sign the petition below.

As affected parents and caregivers of special needs children, we are part of an important stakeholder group and our voice does matter. We are collectively standing to request the following:

1.  Cell / Stem cells for Autism, Cerebral palsy and other disabilities should be permitted to be offered as a treatment in hospitals that have the facilities and doctors to do so as it is the only hope for our children. Our special needs children should not be deprived of their basic fundamental right to health. 
2.  No coercive and forceful action should be taken by Governmental authorities to stop the work or cancel the registrations of different hospitals and doctors specialising in this treatment. This tactic is being used to defame and discredit stem cell doctors and hospitals so that they cannot continue with this pioneering work.
3. The Ministry of Health and Family Welfare has prepared a “list of practices and procedures involving cell or stem cell-based preparations for therapeutic purposes as identified by experts” over a year ago. In this list it is mentioned that for Autism and Cerebral Palsy bone marrow derived stem cells may be used as a clinical option. We request that this list be publicly released without any modifications. Bureaucrats and biased doctors should not be allowed to remove Autism and Cerebral Palsy from this already prepared list by the Health ministry.
4. The National Medical Commission has released a recommendation that stem cells are not recommended for Autism. However, we believe this recommendation was very biased and one-sided since it was based on data of just 2 clinical and 6 review papers ignoring 24 papers that show a positive result. It is surprising that they have not referred to a single paper from India despite the fact the World’s first paper as well as the majority of papers on cell therapy in autism have come from India. Even in the papers they have quoted the positive aspects of the recommendations in the paper such as “stem cell therapy significantly improves scales in patients with autism spectrum disorder” have not been mentioned. The families of children who have taken this treatment and stem cell doctors practicing this treatment have not been consulted before making these recommendations which is against the principles of natural justice as per which both sides have to be given a hearing before passing judgement on any issue This recommendation contradicts several government documents such as the recommendations of The Drug Technical Advisory Board, the list of practices and procedures prepared by the Health ministry as well as it is not in accordance with a judgment of the Delhi High court, September 2019. This incorrect and biased recommendation is being used to shut down stem cell hospitals and trouble and harass stem cell doctors. The NMC should either withdraw this inappropriate recommendation or modify it in accordance with the Health ministry’s list of practices and procedures to say that bone marrow derived stem cells may be given as a clinical option for Autism. 
5. Since the maximum number of scientific papers on cell/ stem cells in autism and cerebral palsy come from India it is important that the Government of India as part of is “Atmanirbhar Bharat” policy evolve rules and regulations to promote and encourage the work of Indian doctors and hospitals in this field instead of intimidating them and trying to make them stop their innovative work. India’s leadership in this field needs to be promoted by governmental policies.
6. Before making any new rules for cell / stem cell for autism and other disabilities the main stakeholders who are us parents of these children and doctors doing these treatments should be consulted and their view incorporated.  

 

Stem cell therapy has given a new life not only to my daughter but also to our family:

I am Ruchita Dhiman, mother of a daughter with special needs. Since Dec 2018, my daughter has had 3 stem cell treatments from Mumbai, India. This has given a new life not only to my daughter but also to our family. Due to her intellectual disability and autistic symptoms, she had development delay in all areas of life, and was unable to complete basic tasks. She could hardly put 2-word sentences together, and did not respond to most of our basic questions due to severe language disability. She did not know her own details like – her full name, where she lives, and name of her family members. Sadly for her own safety, I used to put a wristband on her arm with her details in case anything happened to her or if she got lost !

We have tried various types of rehabilitation since my daughter was 10 months old. Each day we would have to run around from one therapy to another with hardly any progress or improvements in my daughter. We were exhausted, tired and losing hope. When all hope was lost we decided to explore stem cell therapy. After stem cell, within 4 weeks and over a period of 3 years we saw several improvements as follows: -

• We immediately observed that her ability to focus and maintain attention to complete a task improved. which drastically helped with her learning ability.
  She is able to write her own name.
• Her physical / muscle tone improved and she started walking long distances.
• Her independent living skills have flourished. She helps herself to food and drinks from the fridge. Can pour her own juice nicely and she can even make her own sandwiches. She bathes, grooms, brushes her teeth & dresses independently. She plays by herself without needing attention and keeps herself busy.
• Her creativity is blooming, and she even makes interesting doll dresses for her dolls.
• She can have almost normal conversations. conversations are meaningful. She socialises with adults and kids. She is developing friendships and she is very happy to help in house chores
• She is now able to show empathy, affection and concern for her family members and expresses her feelings well.
• She is also more socially aware and a lot more alert and confident.

Stem cell therapy was the best decision for her yet information on this treatment is not readily available. At first there was strong opposition and discouragement from my daughters’ medical and allied support teams. Pediatricians, other medical specialist and therapist in Australia were discouraging us from opting this treatment due to lack of knowledge and awareness but after seeing improvements in my daughter, even the medical professionals and therapist are now promoting stem cell therapy openly. It’s been a very hard road for us (like most other parents on this journey ) but I am grateful to see her progress!

 

Challenges faced by Special needs parents:

Among the challenges faced by many parents is support and care of their young children who are either born with special needs or develop such needs early in life. Like my daughter, other children may also have certain delays in terms of speech, mobility, socialization or academics. It is very difficult to integrate our special needs children in normal school. There is no proper system for integrated education.

In India, the level of support is even more limited for our children and no succinct or clear guidance is widely available for special needs parents. We live in a world where, as family members and caregivers we go through a lot of stress and challenges in having a person with disability at home. Also, because society lacks awareness, nor do they empathise with our struggles, they do not understand our needs.

Like any other parent, we care about our children deeply and we desire to see improvements in our children which they are often not able to achieve on their own. Our children require extra support in terms of therapy sessions and care, and making decisions about different types of treatments and therapies is an integral part of our life. We spend hours of our time on treatment every week, and also large amounts of money on therapies and treatments with a hope that something will work out for our children.  Before choosing any treatment for our children we do research and do our due diligence because our children are fragile and vulnerable. Therapies are a part of our life however very rarely do parents find a cohesive and holistic approach in one place.

People from all over the world come to India so their children can benefit from stem cell therapy. For many of us this is our only hope to see long-term, permanent improvements in our children. This is also a hope for parents and caregivers  to reduce the dependence on caregivers for daily routine which ultimately leads to extreme burnout over an extended period of time, and social isolation of the child and family. 

Things are only beginning to improve slowly for our children via stem cell therapy and unless there is better understanding and awareness of disabilities, and therapies available for our children, nothing will ever change. Children with Austism and other disabilities will be kept hidden with limited opportunities for rehabilitation. It is actually very sad that we face such rudimentary issues even in 2023.

 

Our last hope is taken away:

We believe there is a concerted effort of vested interest to stop this treatment. We as parents have the right to choose what is the best for our children. We question the decision made by authorities and are not sure if these official decision makers have any experience in caring for children with special needs.

As a parent I am very unhappy and frustrated that a lobby of government officials and private companies selling branded stem cells as well other pediatric neurology doctors are opposing this very safe and simple treatment which has the potential to transform our children’s life. This lobby of people whose economic business models are threatened by stem cells should not be allowed to succeed in derailing and destroying this new form of treatment. The beauty of this treatment is that it is very safe and there are very visible beneficial results. I am willing to come to any office of any senior government official to present my case in person. It is important that the people’s voice (like us parents) is also heard in the middle of these bureaucratic attempts to stop us from availing this treatment.  I request the Hon Prime Minister and Hon Health Minister to take leadership role in this matter and to ensure that the bureaucrats who are trying to stop this work in connivance with the private companies are not allowed to succeed in their nefarious designs.  

In this disagreement between the doctors and regulators we the parents of the children with special needs are the ones who are losing not only our hope to seek treatment for their children but also the choice to decide which treatment should be given to our children.  Perspective and opinion of the parents should be taken into consideration into regulations and government decisions particularly when they have a direct impact on the lives of our special needs children. We have been robbed of our most fundamental right to try a treatment that is beneficial for our children. The fundamental right to seek treatment can only be denied if the treatment has high probability to cause harm to the patients. It is inhumane and unethical to withhold this right just because a treatment option does not satisfy the outdated standards of efficacy set by regulatory authorities. If any treatment brings about even the smallest of the improvement in the special needs child then a parent has every right to try this treatment.

As affected parents and caregivers of special needs children we strongly oppose this attempt of the lobby to deny us this fundamental right to treatment. We request the Hon Prime Minister and Hon Health Minister to:

1. Intervene in this matter and ensure that the attempts to stop this work are thwarted,
2. Release the Health ministry’s already prepared, one year ago “List of practices and procedures involving cell or stem cell based preparations for therapeutic purposes as identified by experts” which states that bone marrow stem cells can be used as a clinical option in autism and cerebral palsy as well as release the “SOP”, and
3. Kindly pass any other order/direction as the Hon. Prime Minister and Hon. Health Minister of India may deem fit in the interest of justice, equity and good conscience keeping the needs of special needs parents and their children foremost in mind.
    

Voice of parents below :

Dr Sandhya Gokavarapu

“I am a doctor and a mother of an autistic child treated at neurogen, stem cell therapy had significantly improved my daughter’s situation, she was severely autistic and after therapy she is mildly autistic. This made great difference in our life. Currently, incidence of autism is 1:100 and these kids are going to be great burden for families and countries unless a drastic step is taken to treat them.”

Gaurav Kudesia

“This is completely untrue. Neurogen is doing honest work and helping lot of the children and parents to improve their lives. By stopping this hospital they are basically want the parents to be at the mercy of therapists, doctors who want to keep these children dependent for life. Neurogen provides hope and no treatment can claim 100% success. Our PM Shri Modi supports stem cells, it is strange that such vendetta is being allowed to carried out against this hospital.”

Anonymous

“My 2 cents. If it has benefitted someone, let it benefit. If some parents have doubt, they refrain the stem cell treatment or visiting Neurogen. No one is at a gun point to do something. Everyone in this group, I repeat, every single parent in this group wants the best for their kids. So there is no right or wrong here.”

Anonymous

“Why target just one therapy? As if other therapies have given 100 percent results? And why do they think these other therapies are cheap? We're paying $$$ out of pocket for ABA and speech for years but have’t seen results.”

Muthakshmi

 “This is totally unfair for all the special needs families. This has helped my 12 year old CP child and we have done the second shot recently. Does any of the so called physiotherapy occupational therapy special education a DL vision therapy speech therapy give any kind of guarantee when working on your child... Not at all everybody want to mint money.. we trust neurogen as they have given as results by proving what they do.. committee extra any kind of medical approval cannot stop us from doing good to our children.. is this government doing any free cause of the rupees quality therapies to the special needs then I agree that neurogenist charging more. Every therapist makes money with the name of special needs then how come only neurogen is pointed out? Don’t play politics in the name of special needs and in the name of neurogen.. let us accept these advancement in India..”