Boston, Massachusetts – Boston Children’s Hospital files a lawsuit against Prince Abdelilah bin Abdelaziz bin Abdulrahman Al Faisal Al Saud for unpaid medical bills of more than $3.5 million for an unnamed child’s medical care. The Saudi Arabian prince previously agreed to pay for the Saudi Arabian child’s care in the hospital.
The lawsuit was filed in United States District Court in Boston City. The unnamed two-year old child has been under the care of the Children’s Hospital since November 2017 and is still a patient as of this writing. The child has Type 1 spinal muscular atrophy (SMA), a rare genetic diseases requiring life-long treatment.
While there’s a drug used in its management, known as Spinraza, it isn’t available in Saudi Arabia, the child’s home country.
Spinraza (nusinersen) is the first and only drug therapy approved by the United States Food and Drug Administration (FDA) in the treatment of SMA in children and adults. The drug showed resulted in significant improvements in motor neuron survival and function, thus, its approval in the management of infantile-onset SMA and in SMA Types 1, 2 and 3.
According to hospital officials, Prince Abdelilah made an initial payment of $750,000 but he hasn’t made any additional payments. He learned about the child’s condition through the media, contacted the child’s family, and then offered to pay for the child’s medical care in the United States.
The court records didn’t list any attorney for the Saudi Arabian prince. But the lawsuit also named Dr. Hamdy Dawoud, the prince’s representative and doctor.
In the lawsuit, the hospital asserted that the prince subsequently refused to pay for the patient’s medical care after he made the initial payment and even as the bills quickly increased. The hospital also went to extraordinary lengths including hundreds of phone calls and emails in order to collect the money.
Children’s Hospital also alleges that it enlisted the assistance of doctors at the Brigham and Women’s Hospital but with no results. The prince previously received medical care from the latter hospital. Doctors at Brigham and Women’s Hospital also urged Children’s Hospital to admit the unnamed child as its patient, according to the lawsuit.
Dr. Phillip Camp told Carol Saul that the prince made the pledge for the payment of the patient’s medical care, as well as that the prince has the means for paying the cost from his personal funds. Dr. Camp was a thoracic surgeon at Brigham and Women’s Hospital at the time and a self-described surgeon and family friend of the prince. Saul was then the international programs manager at Children’s Hospital.
There are no public statements from Prince Abdelilah bin Abdelaziz bin Abdulrahman Al Faisal Al Saud and/or his representatives at the time of this writing.
Spinal muscle atrophy (SMA) is characterized by muscle weakness and atrophy caused by the progressive loss of motor neurons. The rare genetic disease is caused by the SMN1 gene mutations; the SMN1 gene provides the instructions in making SMN, a protein essential in the survival and function of motor neurons. The disease comes in several types from 0 to 4.
The most common type is SMA Type 1, also known as Werdnig-Hoffman disease, wherein the symptoms typically either at birth or by six months old. The symptoms in infants include weak muscle tone, or hypotonia, especially in the arms and legs, as well as difficulty eating and swallowing, breathing, and moving. Infants aren’t able to raise their head and/or sit without assistance.
SMA Type 1, however, don’t seem to affect the cognitive function in infants. Patients are generally alert, responsive and bright despite their muscle weakness.
Doctors use several tests in making a definitive diagnosis of SMA. The tests include a muscle biopsy and an electromyography although the most accurate method is DNA testing. In it, a small blood sample is taken from the patient and it’s studied for mutations in the SMN1 gene on chromosome 5. The test results are usually released in 2-4 months.
At present, SMA doesn’t have a cure yet. But there are available treatments for managing the symptoms including reducing the discomfort associated with it, as well as maintaining quality of life for as long as possible.
Aside from Spinraza, there are other cutting-edge treatments on the horizon. These treatments may significantly improve the patients’ quality of life. These include Zolgensma, a proprietary gene therapy being developed by AveXis for treatment in SMA Type 1 in infants.
Other medications are also prescribed for the management of the wide range of symptoms. Glycopyrrolate, for example, is administered to decrease drooling although it’s prescribed with care due to its side effects.
Caring for infants and children with SMA Type 1 requires a multidisciplinary approach to ensure that they are receiving prompt and appropriate medical care. Aside from doctors, occupational therapists, physiotherapists, and respiratory specialists should ideally be on the healthcare team.
Unfortunately, SMA Type 1 is a progressive disease and, thus, the symptoms associated with muscles weakness become worse over time. Most infants don’t survive past two years old due to respiratory failure.