17 Responses

  1. M. Coole
    M. Coole at | | Reply

    With today’s technology, screening newborn children is an excellent approach to be able to detect SCID. However, some families might not be able to afford to pay for their child to be screened. According to PubMed, it can be an extremely costly process. More children could be saved if this process was more affordable. With new health insurance policies and government assistance, screening for SCID and other diseases could be available to everyone.

    1. M. Brydson
      M. Brydson at | | Reply

      Whether a child is screened for Severe Combined Immunodeficiency (SCID) or not is not initially cost dependent. It is based on the complexities of screening and states facilitation in their screening programs. Once an expectant mother is admitted to a hospital for delivery, her baby is entitled to be screened for SCID. Moreover, SCID screening is dependent on the state that facilitates such a screening. According to the CDC only 16 states currently screen for SCID. The states each decide whether screening for SCID and other Heritable Disorders in Newborns and Children (SACHDNC) will be included in health programs. The SACHDNC make recommendations to states which consists of a core panel of 31 congenital disorders and SCID was recently added in 2010.

      cite=“ http://www.cdc.gov/newbornscreening/scid.html”> Sixteen states now screen for SCID: Wisconsin, Massachusetts, California, New York, Michigan, Connecticut, Mississippi, Delaware, Colorado, Texas, Minnesota, Florida, Utah, Ohio, Washington, and West Virginia, which covers more than half of all babies born in the U.S. each year. This number is increasing as more states start screening.

      SCID screening employs a technique in which after the baby is born, a health professional takes a few drops of blood from the baby’s heel and it is sent to a state laboratory to be tested. When screening does become expensive according to The National Human Genome Research Institute are for those who requiring prenatal screening for SCID to be detected before birth– “if the mutation leading to SCID in a family is known an at-risk pregnancy can be tested by sequencing DNA from the fetus. However, SCID is so rare that prenatal testing of a baby with no family history is probably not justified because the test is so expensive.”

    2. B P 9 4
      B P 9 4 at | | Reply

      Looking specifically into the cost-effectiveness of this SCID screening, I researched on whether the Affordable Care Act covered this preventive care screening. It does not as of April 2015 most likely because it is so rare and falls behind the more prevalent diseases that are found in newborns such as PKU and sickle cell disease. Millions of people have insurance under this controversial act, and if each of them have a child, that is millions of babies that are possibly not being screened for SCID because it is so costly.

      To see the preventive care covered under the Affordable Care Act, look at this PDF:

    3. Anuj Patel
      Anuj Patel at | | Reply

      I highly disagree with the comment that screening for SCID is costly. Maybe 5-10 years ago it was however it is slowly becoming very cost affordable. Right now it only costs from $1,000 to $4,000 to sequence ones DNA. We are advancing at a significantly faster rate then Moore’s Law, which is the trend that our technological capacity doubles every two years. With this, our outlook is limitless and not just with SCID. We will soon have the ability to map out the full genome of each person for the price of a normal checkup. We will be able to see each potential disease, deficiency and abnormality, allowing us to properly prepare for it. Jennifer Puck’s comment about “If you don’t find them, you can’t treat them,” will soon become solved as we can find it if we begin to map out each newborn or even fetuses one day.

      1. smarieit
        smarieit at | | Reply

        I dont think it’s okay to say something is just $1-4k. Even though that is down on the spectrum for medical expenses, it is still a lot of money. And here in the US, babies are being born to teenage mothers more than anything. These families are probably not even aware of all the risks their babies face. I believe pre natal care should involve screening for the mommy and the baby.

  2. J.Wilson
    J.Wilson at | | Reply

    It is good to see the advances in the detection of such a deadly disease. However, because it doesn’t not greatly impact as many newborns as other illnesses I do believe that SCID is something that does not get tested as it should. As the article stated, SCID affects about 1 in 58,000 newborns and unfortunately with stats like that it might be hard to galvanize people around the importance of this issue as compared to the almost millions affected by things like AIDS and cancer. I do agree that insurance companies should help to offset the cost of such test and even more provide incentives for parents who do everything necessary for their newborn to be healthy like getting their child screened for SCID.

    1. A. Huezo
      A. Huezo at | | Reply

      Any illness encountered by a newborn is serious. Improving research methods, testing, and medical practices will help for early detection as well as treatment. As stated, the number of newborns this was thought to inflict was more than originally thought. With the increase in frequency I disagree that it would be hard to galvanize people around this issue. Other research has attributed the increase in any newborn illness to the increase of c-sections.

      This article gives reasons for the change in an infants immune system due to unnatural (non-vaginal) birth. Due to the sterile field, the infant isn’t “infected” with normal flora at birth. This leads to development of many diseases as stated in the article such as cancer like you mentioned as a more impending problem. I propose that the conditions are more connected than we realize and that increasing the awareness of the fatal disease of SCID could help bring an end to all diseases genetic and environmental that take millions of lives a year

      1. Eugene Lee
        Eugene Lee at | | Reply

        But in this situation it’s not a disease so much as several deleterious mutations that keep functional B Cells and T Cells from forming in these children’s bodies. SCID is caused by numerous mutations in the afflicted person’s genetic code, this cannot be prevented and inoculated against like a bacteria or virus. Which means this really isn’t so much about children not being introduced to mild pathogens early enough and not developing a defense against them early. But instead a situation of even if they were exposed to pathogens no matter how week their immune system is too compromised on a genetic level to start mounting a defensive response.

      2. S M K
        S M K at | | Reply

        To my understanding, testing for SCID before the baby is born is very expensive and seldom done unless there’s a family history. But, if this is the case, would it not be a better idea for everyone to have a C section? If the baby does have SCID and is birthed the traditional way, he/she will be exposed and infected with the vaginal flora, which could be deadly as it has no immune system to keep them in control. Even though C sections result in problems in the future, if there’s even a slight chance of your baby having SCID, is it not smarter to use C section so the infant is not infected?

  3. A. Bhansali
    A. Bhansali at | | Reply

    As stated in previous comments, it is a modern miracle that medicine is able to detect and diagnose such a harmful disease as SCID so early in the development of a child and even through this diagnosis be able to potentially treat and cure the suffering newborn. However, this article mentioned that there is a “treatment” for SCID if it is diagnosed early enough, but neglected to inform the readers how exactly the issue of stem cell transplantation would progess and its effects on the mother. Although the readers can look up the information themselves, it would still be a great addition to shed more light on this incredibly important topic of treatment. Also, it would be another thing to consider the price of such a treatment along with the cost of the screening itself! Healthcare can be extremely expensive at times, and I am much for the continuation and enlargement of funds dedicated to helping those who need medical treatment. Not only that, but some hospitals may not screen for SCID and thus it should also be noted that increasing hospital participation for screening and treatment, as well increasing awareness of SCID treatment overall would be a large boon towards the goal of SCID free children.

  4. Hitoyou
    Hitoyou at | | Reply

    The article states that there is only a screening for newborns. I am curious as to if there is a possibility to screen the fetus for SCID as opposed to waiting for the child to be born. If done while in the womb, the screening could help prepare the parents and even the doctors for the birth of a child with an immune deficiency. It may be possible for the screening to be done using a sampling of amniotic fluid.

    1. M. Brydson
      M. Brydson at | | Reply

      There is prenatal screening that is available if the mutation leading to SCID is known. Therefore, at-risk pregnancies can be tested by sequencing the DNA from the fetus. This technique is quite costly, so how many expecting parents can potentially benefit from it? Then, there are additional costs that are associated with preparation for a child being born with SCID. The National Bone Marrow Transplant Link mentions that these transplants too are quite costly. There are expenses covered by insurance companies and then there is another lengthy list of what is not covered such as lodging for follow-up care, child-care, transportation, over-the-counter medications etc. There are costs associated with if the family has to find the donor, whether a donor will be for the family and the cost of the transplant itself. For example, “An autologous transplant may range from $50,000 to $100,000 depending on the circumstances. An allogeneic transplant may range from $150,000 to $200,000.”

  5. D I
    D I at | | Reply

    The addition of screening for SCID to the other general exams that are performed on newborns provides a great advantage in medicine since this screening provides the detection of this disorder at early stage, therefore allowing primary caregivers to execute the next step of protection against SCID before it advances. The eventual defense against SCID is for newborn to acquire the ability of forming an immune system, consequently B and T lymphocytes along with other immune cells will be produced to recognize various infectious particles and destroy them before they progress to become severe infections. As stated in this article, one of the methods to help newborns gain immunity is thru transplant. In addition, two mechanisms have been used to prevent SCID which are enzyme and gene therapies. Overall, it seems that SCID can be controlled with the use of the screening technique.

    1. B P 9 4
      B P 9 4 at | | Reply

      Specifically the bone marrow transplant could replenish the specific, adaptive part of the immune system, by produce T lymphocytes which are no present in children with SCID. The T lymphocytes are differentiated into T helper cells and cytotoxic T cells, which are specific for different antigens; they aid in the killing and kill pathogens, respectively. These cells are produced in the bone marrow and mature in the thymus. B lymphocytes are present in children with SCID but do not work properly; they are differentiated into plasma cells which act as antibody making machines. Both lymphocytes fight infections, so with the bone marrow transplant, the patients could survive more infections than they would without them.

  6. Medhavi
    Medhavi at | | Reply

    Newly born child looks healthy even if it has SCID in the mother womb as it is protected by the immune system of mother.
    SCID can be inherited either X-linked recessive or autosomal recessive. The X linked recessive is the most common, the gene is present on the X chromosome. This X chromosome can be from mother or father If mother is carrying the nonworking copy gene she is called carrier.
    Genetic testing are available i.e. DNA testing which can help parents to know the chances of SCID in their child and can go for the further treatment. Other test like T cell receptor excision circle (TRECs) tests can be done in which the child blood is tested for T cells, if the T cells are present it will show the circles otherwise if the baby is SCID will show no or few T cell circles.
    In a review it was mentioned that even during pregnancy SCID can be tested if the genetic history have been detected in the family.

  7. smarie
    smarie at | | Reply

    Our babies are our future. And the mommy’s health is important. So I don’t understand why only certain states provide testing. With the advancement of technology and medicine, I hope that soon sequencing will be affordable for expecting mommy’s so that they can have the best care for their babies. It does make sense to me that testing is available immediately after birth. But again this is only in the states that provide it? So is any prenatal or after birth testing available in these states?

  8. Ransom
    Ransom at | | Reply

    Wow, what a heartbreaking introduction. I’m surprised to know that this is a real thing, but at the same time after learning of the importance of the immune system it doesn’t shock me. Our biological pathways follow specific routes with multiple ends, beginnings and workarounds, but if one crucial signal receptor undergoes a loss of function mutation which is the case in XSCID your whole system is defective. Or in the case of the ADA deficient type of SCID, the signaling molecule is where the defect lies. The immune system is CRUCIAL. Kids that go untreated don’t make it past two, and they probably only get so far due to maternal antibodies via placental and breast milk transfer. You may take your baby home and there may not be any visual signs of the disorder, or you may not understand what you are looking at. That sounds like a nightmare for parents, and I’m glad that we have people working to ensure this doesn’t happen and ensuring the growth of our “taxpayer”. Its like she was talking to congress or something.

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