We want Newborn Screening for the State of North Carolina for Fabry Kidney DiseaseTesting to the Newborn Testing Panel.
  • Petitioning The United States of North Carolina Governor

This petition will be delivered to:

Office of the Governor Pat McCrory
The United States of North Carolina Governor
Representative Ken Waddell
The United States of North Carolina House of Representative
Senator Michael Walters
The United States of North Carolina House of Senate
Representative Phil Shepard
The United States of North Carolina House of Representative
Representative Chris Millis
The United States of North Carolina House of Representative
Representative George Cleveland
The United States of North Carolina House of Representative
Senator Harry Brown
The United States of North Carolina House of Senate
Amon E McKenzie
Columbus County Commissioners District I
James E. Prevatte
Columbus County Commissioners District II
Giles E. (Buddy) Byrd
Columbus County Commissioners District III
P. Edwin Russ
Columbus County Commissioners District IV
Trent Burroughs
Columbus County Commissioners District V
Charles T. McDowell Chairman
Columbus County Commissioners District VII
Clerk to the Board June B. Hall
Columbus County Commissioners District Clerk to the Board
Royce Harper Mayor, Miona Fonvielle Mayor Pro Tem, Trent Burroughs Councilman,
TABOR CITY TOWN & COUNCIL STAFF
Kevin Norris Chairman, Roger Gore, Richard Gore, Carolyn Chestnut, Mitchell Strickland
TABOR CITY TOWN & COUNCIL STAFF
Patrick Milligan,Tommy Spivey, Mike Richardson Chief Building Inspector
TABOR CITY TOWN & COUNCIL STAFF
David Mincey Councilman, Mitchell Ward Councilman
TABOR CITY TOWN & COUNCIL STAFF
North Carolina Sentate
Senator Ralph Hise (Rep)
North Carolina Senate
Senator Martin L. Nesbitt, Jr. (Dem)
North Carolina Senate
Senator Gladys A. Robinson (Dem)
North Carolina Senate
Senator Floyd B. McKissick, Jr. (Dem)
North Carolina Senate
Senator Tamara Barringer (Rep)
Senator Richard Burr
The United States of North Carolina Government
North Carolina Senate
Senator Austin M. Allran (Rep)
North Carolina Senate
Senator Louis Pate (Rep)
The United States of North Carolina Government

We want Newborn Screening for the State of North Carolina for Fabry Kidney DiseaseTesting to the Newborn Testing Panel.

    1. Petition by

      USA Fabry Awareness Club

     I come from a small town in Columbus County North Carolina of Tabor City growing up in the back woods and good times of farming. I joined the Navy in 1999. Currently my family has retired and lives in Onslow County of Jacksonville. My Dad and Uncle were Southern Boy's of the Carolina's. Born and raised in Loris of Horry County a skip and hop on the boardline of North Carolina and South Carolina. In 1990, I lost my father Dennis Earl Milligan. I lost my Unlce William Alton Milligan in 1992. They both were on Diaylsis. They both went to same doctor office in Tabor City but seen different doctors. My Dad Dennis did diaylsis in Wilmington and Whiteville of North Carolina. My Uncle Alton did diaylsis treatment in Myrtle Beach and Loris of South Carolina. My Uncle was tested in the early 1980's for Fabry in Charleston, SC. My Grandma Euduelle Milligan lived to be 84. She never recieved any medical care to treat her for Fabry. She died a slow and pain death. My Dad and Uncle died in their early 40's and still had plenty of life in them if they had had the proper treatment. One thing I can say about my Dad; even on diaylsis he lived his life to the fullest. He still did farm work until he couldn't no longer. He built our home for scratch and he was a night owl because of the heat. My Dad and Uncle left behind 2 brothers James Elton Milligan (which was my Uncle Alton twin) and Curtis Allen Milligan and 1 sister Edith Blackwell. They had sereval neices and nephews. And for me my Dad Dennis has 2 granddaughter they will never have the honor to meet him and make lifetime memories with him. I was very blessed after his death; I went to live my cousin Renee' and was raised by my Uncle Rodney Gore and Brenda Gore. When a child loses a parent to Fabry Disease, alot of things in that childs life change. Who will take care of them? Just the lost is painful enough.  My family was not educated nor knowing how serious the disease. Fabry is a Genetic Disease. I hope this Petition will help Save A Life. 

    My situtation was of not knowing a father with Fabry will automatic pass the gene to a daughter but a father can't pass the gene to a son. A woman with Fabry use to be just called "Carriers" the Fabry Community has fault to change the label against a woman Fabry. A woman has 50/50 change to passing the gene to each child they bare. The early Fabry is caught the better treatment can be as the child grows. I have a daughter Hannah Angelica Gonzalez age 12; she chose to do Clinical Trials for Shire's Company out Canada because we had a serious short of Americans getting treatment of the drug of Fabrayzme (made here in the United States but shipped to other countries). Now Hannah is doing treatment at Duke of Fabrayme Infusion. The Shire's infusion took only 45 minutes; when bag was hanged and now her treatments last between 6-8 hours. With out treatment she would not be able to function. We travel every 2 weeks leaving on Monday afternoon; Tuesday is infusion day and it depends how she feels to travel back home. We have lost many in the Fabry Community because of medication shortage. We have Fabber's still in the battle that was effected by shortage getting their medication because of the cut back on treatment are on the rebound of health issues.

     I have a 4 month old Autumn Heavenleigh. She was born at Duke. Her screening for Fabry was done at birth; which her Mutation came back to be Leu19Gln. Hannah and my screening for Fabry was done at Mt. Sinai Hopital in New York and our Mutation came back to be L19Q. Now Duke is retesting my family members they feel need to be retested. So for my family it's back at square 1 for they same the Mutation Leu19Gln their is no one else in the Fabry Community with this gene mutation. We are fine with the girls being monitored under doctor's care because Hannah understand that it could help save another person life. 

      Fabry Disease does not just effect the Kidney. It effects all the organs the body as whole causing mulitple symptoms. For a male of Fabry; if he does not recieve treatment they have done a life time chart in late 30's and into the 40's he will be on dialysis. Male seem to have early death without proper care and monitoring. Males common have to be on the ERT Therapy to avoid diaylsis treatment. Fabry Woman are in the battle of correction of Medical Information given to doctors. Victory has not been won because so to remove the stamp branded as a "Carrier". It is hard enough to be in the mist of a battle of having Fabry but conveincing your doctor is unreal. Doctor read misleading information online and think they are school by the literature but a Fabber' knows Fabry Disease. Instead of asking what can they do to health instead many doctors cause Fabry more stress then doing them good. 

     Can you look at someone and say they have Fabry? Depends on health coniditon how far progression of the disease has gone but for some; "NO!" you would need to know information about Fabry to take a guess.  For years, I have spent time and money for co-pay and my health paid medicals that was a waste. Misdiagnosis. Made to feel your a lier, or are a Munchausen by proxy syndrome (MBPS) person or are malingering and do get told it is all in your head. First thing a doctor does that doesn't know of Fabry after you've been in and out of the office. With same symptoms and news one, write off a prescriptions and tell you go see a shrink. When you know something is wrong with yourself or your child; you will become desprate for answers.

What is Fabry disease?

     Fabry disease is a rare genetic disorder caused by a defective gene (GLA) in the body. In most cases, the defect in the gene causes a deficient quantity of the enzyme alpha-galactosidase A. This enzyme is necessary for the daily breakdown (metabolism) of a lipid (fatty substance) in the body called globotriaosylceramide or GL-3. When proper metabolism of this lipid and other similar lipids does not occur, GL-3 accumulates in the majority of cells throughout the body. The resulting progressive lipid accumulation leads to cell damage. The cell damage causes a wide range of mild to severe symptoms including potentially life-threatening consequences such as kidney failure, heart attacks and strokes often at a relatively early age. Fabry disease is described as a progressive, destructive and potentially life-threatening disease. Fabry disease can affect males and females of all ethnic and cultural backgrounds.

How is Fabry disease inherited?

      Fabry disease is inherited in a X-linked manner. This refers to the location of the gene for the enzyme alpha-galactosidase A, which is found on the X chromosome. The X and Y chromosomes, two of the 23 pairs of chromosomes in the human body, among many other functions determine the sex of an individual. Females have two X chromosomes. Males have one X chromosome and one Y chromosome. Affected males pass their one affected X chromosome to all of their daughters. In this way, all daughters of affected males are considered "obligate carriers" of the gene for Fabry disease. This is assuming paternity is not of concern. Whether or not a female is so-called "affected" by Fabry disease must be determined on an individual basis. Some females are as affected by the symptoms of Fabry disease as severely as a male with the classic form of the disease, while others may be seemingly asymptomatic or only experience mild symptoms, or an individual exhibit any variation of symptoms in between.

     Researchers and treating physicians have learned in recent years, however, that females without symptoms is the exception rather than the rule. A very high percentage of females carrying the Fabry disease gene are affected and have significant disease symptoms warranting treatment with Enzyme Replacement Therapy.

     Affected males do not pass the Fabry disease gene to any of their sons; sons receive their father's Y chromosome and therefore, a son cannot inherit Fabry disease from an affected father.

      Every time a carrier female has a child, there is a 50% chance that she will pass her affected X chromosome to the child, and a 50% chance that she will pass her normal X chromosome to the child. This means that there is a 50% chance that every daughter born to a carrier female will inherit the affected X chromosome and will be a carrier (and possibly symptomatic/affected) for Fabry disease. There is a 50% chance that every son born to a carrier female will inherit his mother's affected X chromosome, and will therefore, be affected with Fabry disease.

Fabry Disease Symptoms List

     The many signs and symptoms of Fabry disease vary from signs that usually do not have physical health impacts such as angiokeratoma (skin lesions) and corneal opacities (whorling or streak-like cloudy patterns in the eye) to very severe symptoms such as heart attacks, strokes, and kidney failure. While the age of onset, progression, severity, and health implications can vary significantly, the symptoms listed here are very common for most individuals with Fabry disease.

The many common symptoms of Fabry disease include:

■Numbness, tingling, burning or other abnormal sensations especially in the hands and feet (acroparesthesias)

■Pain attacks/crises: pain attacks which can last from short to very long durations and can be mild to disabling. These attacks may be accompanied by body aches, fever, and fatigue.

■Fevers often resulting in clinic/hospital visits especially in but not limited to childhood

■Frequent overall body ache or discomfort

■Intolerance to physical activity

■Mild anemia

■Frequent and/or chronic fatigue

■Hot and cold temperature intolerance

■Reduced or absent sweating (hypohidrosis or anhidrosis respectively) often resulting in overheating with exertion

■Swelling (edema) in the lower legs, ankles and feet often without clinical symptoms of heart or kidney problems

■Corneal or lenticular opacities - streaked or whorled opaque/cloudy pattern on the cornea and sometimes on the lens of the eye (Corneal verticillata and Fabry cataracts)

■Small, sometimes clustered, slightly raised red or reddish-purple skin lesions (angiokeratoma). Often concentrated in but not limited to the bathing suit and trunk areas.

■Gastrointestinal issues - frequent mild to severe diarrhea, flatulence, bloating, stomach or intestinal pain and cramping

■Early satiety (feeling full sooner than normal or after eating less than usual), food intolerance, and difficulty gaining weight

■Obstructive or constrictive lung disease often evidenced by wheezing, chronic cough, shortness of breath or labored breathing (dyspnea), recurring bronchitis and fatigue (often diagnosed as obstructive pulmonary disease)

■Ringing in the ears (tinnitus), and progressive or sudden hearing loss

■Weakness, lightheadedness, dizziness, vertigo (spinning dizziness) and headaches from neurological damage, and other cerebrovascular disease impacts

■Peripheral neuropathy (damage to the peripheral nervous system) which causes or exacerbates many other Fabry disease symptoms

■Transient Ischemic Attacks (TIAs), usually referred to as mini-strokes, that are usually short in duration

■Strokes (often at an abnormally early age)

■Impaired kidney function and kidney failure usually without diabetes

■Kidney Dialysis and Transplant

■Heart complications such as arrhythmias (generally abnormalities in the heart's rate or rhythm including atrial fibrillation); left ventricular hypertrophy (LVH)/enlarged heart often without high blood pressure; and malfunctioning heart valves

■Heart attacks and heart failure Because of the progressive, destructive and potentially life-threatening nature of Fabry disease, early identification, evaluation and diagnosis are critical to the health and well-being of individuals with this disease.

     The symptoms of this disease are varied but quite well defined and seem quite clear to a physicians, genetic counselors, nurses, other healthcare providers, and individuals with Fabry disease who are involved with the disease on a routine basis. However, to the healthcare providers and other individuals without more intimate knowledge of this rare disease, recognizing Fabry disease is like looking for a needle in a haystack. Connecting all of the dots (symptoms) and recognizing the disease to enable evaluation and diagnosis is often difficult.

     Once an individual is suspected to have Fabry disease, evaluation and testing must occur to confirm whether the Fabry gene is present. If the Fabry gene is present, a determination must be made as to the appropriate course of action for evaluation, monitoring, management, and treatment. Individuals aware they carry the Fabry gene versus the individuals suffering from a diminished quality of life for an unknown reason are significantly better able to cope with their disease.

     There are still thousands of people suffering and dying from Fabry disease at an early age who are unaware of the reasons why.

      Please help change this of losing family memeber and friends too Fabry. People have decidated time and effort to bring more awareness to the Fabry Community. The Charles Kleinschmidt along with others help bring families together at Victory Junction in NC.

      For myself, I designed the Fabry Awareness Ribbon to spread the word. There is already States testing for Fabry please help pass the law to have Newborn Screening in other states such as: Missouri, Illinosis, New Mexico and New York.

     Signs of Fabry disease can begin any time from infancy to childhood. Usually, signs begin to show between the ages of 4 to 8.

Signs of Fabry disease include:

  • Episodes of pain, particularly in hands and feet (“Fabry crises”)
  • Small, dark red spots on skin (angiokeratomas)
  • Loss of ability to sweat (hypohidrosis)
  • Cloudiness in front part of eyes (corneal opacity)
  • Hearing loss
  • Difficulty gaining weight
  • Stomach pain, nausea, and vomiting
  • Unknown cause of kidney failure
  • Heart murmur (arrhythmia)

     Fabry crises may increase in intensity when your baby has a fever, is physically active, or under fatigue or stress. Rapid changes in temperature may also bring about these episodes of pain.

     Many of these signs occur over time due to the build up of harmful substances in your baby’s cells. They can be triggered by long periods of time without eating, illnesses, and infections.

Who named Fabry?

What are other names that Fabry is called and known as: Anderson-Fabry disease Alternative eponyms

•Anderson’s syndrome

•Anderson-Fabry syndrome

•Fabry’s syndrome •Fabry-Anderson disease

•Morbus Anderson-Fabry

•Ruiter-Pompen syndrome

•Ruiter-Pompen-Wyers syndrome

•Sweeley-Klionsky disease or syndrome Related people

•William Anderson

•Johannes Fabry

•Bernard L. Klionsky

•Arnold Willem Maria Pompen

•Maximillian Ruiter

•Charles C. Sweeley

•Herman Joseph Gerard Wyers

      A rare, inherited metabolic disease in which a glycolipid, ceramide trihexoside, accumulates in blood vessels, as well as in numerous tissues and organs. Description A rare, inherited metabolic disease in which a glycolipid, ceramide trihexoside, accumulates in blood vessels, as well as in numerous tissues and organs. The excessive amounts present in the kidneys and other organs impairs their function. Due to absence of æ-galactosyl hydrolase. Patients present with the skin lesions, small red spots seen on the lower abdomen, thighs and scrotum, corneal opacities, episodes of fever, primary aparasthesia of the extremities and peripheral oedema and renal failure. Prevalent in males, who present full-blown syndrome, females may present a partial form.

     Symptoms start in childhood or at puberty. Death usually occurs in adulthood. Family history. An X-linked syndrome with complete penetrance and variable clinical expressivity in males. Female carrier asymptomatic. The disturbance was first described in 1898 by Fabry in Germany and Anderson in England. Anderson's patient was a male aged 39 years who had an eruption on his trunk, genitals and proximal limbs. He recorded that the patient had been afflicted since childhood and that varicose veins, rectal bleeding and albuminuria had developed. Anderson termed the condition "angiokeratoma" and suggested that there might be generalised changes in the vascular system. Fabry conducted independent studies of an affected boy. In his article Fabry used the designation "purpura haemorrhagica nodularis".

      A further case was recognised in Egypt by Frank Cole Madden (1873-1929) in 1912 and the condition was mentioned again by Fabry in 1915 under the title "Angiokeratoma corporis naeviforme". Fabry retained his interest in the disorder and published the autopsy findings after his patient's death in 1930.

How common is Fabry disease?

    Fabry disease is a rare genetic disorder. The most common U.S. statistics referenced in published literature indicates that Fabry disease is present in 1 in 40,000 to 1 in 50,000 males. Due to the greater complexity of determining the occurrence in females and because we are not aware of any published studies, the occurrence in females is not specifically stated. However, the population of known affected females is rapidly increasing over original expectations due to better understanding of the random nature of disease manifestations in females.

     Estimated cases in the United States based on currently published statistics: According to the census bureau's population estimates and the estimated prevalence of Fabry disease, there are approximately 3,800 males with Fabry disease in the U.S.

      Based on Hardy-Weinburg principles of genetic frequency and the estimated male population, there may be an estimated 7,600 females that carry the Fabry gene but an unknown number of females affected (having significant symptoms) by the disease.

     These estimates put the number of individuals carrying the Fabry disease gene in the U.S. at over 11,000 according to currently published statistics.

     However, based on newborn screening studies in two countries, Italy and Taiwan, we believe there are really about 50,000 people in the U.S. with Fabry disease including classic and late-onset forms of the disease. Medical literature is littered with references to the unrecognized and undiagnosed nature of Fabry disease.

    It is tragic that such a low number of people with Fabry disease have been recognized, diagnosed and provided the opportunity for treatment. Physican and family education is critical to enable individuals unknowingly living with Fabry disease to live better and longer lives.

     It is sad when you are the parent or the patient and you have to tell your doctor the education on Fabry. You have to make plans with your childs school for things they can't do. We have children on pain medicine going to class.

     My daughter Hannah has missed over 30 days of school but she is a person say; "she has Fabry but Fabry doesn't have her"; she is determined to live life to the fullest.

     Please don't let another human life fall through the cracks; when it can be saved at the start of their life. Just a simple stick and lab draw could save a life and save insurance cost on going to doctors. Save on prescription that can do more harm with person with Fabry. Or the expense of having some one on Diaylsis.

      If you go into a Children's Hospital and did tour your heart would change. To make a change in the Fabry Community is standing United together. If I could I would scream from the highest mountion. Fabry will make you fall to your knee's cause you don't understand the why's or in our minds we do ask how long do I have to live?

     Thinking of your child; the pain and suffer the diease causes them and all things they miss out on. Fabry is killing disease and it also is a killer to the happiness of a human.

     If you like more reading material; Please go to Facebook;  We have support groups: Fabry's Disease Info and Support; Fabry Disease Support and My page USA Fabry Awareness Club. Read some of Fabber's stories of daily life. One's of Fabry Community has created Websites for Education about Fabry; just Google "Fabry Disease". Fabry Disase is a Rare Genetic Disease you can also search on Facebook; Kidney Disase Groups and Children of Rare Diseas. And you search Kidney Disease Walk  -A-Thon in your home town. 

      Please sign this Petition to have North Carolina to change the law for Newborn Screening for Fabry Disease.

     The help of the Fabry Community the Fabry Community has maked April as recognized Fabry Awareness Month. We don't plan backing down. We want to be heard. American's SHOULD NOT have medicine shortage. In the State of North Carolina if you apply for Social Security and get turned down you are no longer entitled to other Government aid such as Adult Medicaid. You have to be 7% kidney function lose to get help or be on Diaylsis. You can't get put on the transplant list without insurance neither. It's amazing all the red tape you have to go threw if you seriously need help; when all the red tape is stressing you out and taken a toll on the body.

     Please unborn and other peoples lives depend on a change. Our voices are the best Awareness.

     Thanks on behalf of Ann & Hannah & Orlando Autumn & Glendon and the Milligan Family memeber for ones we have lost due to Fabry.

usafabryawarenessclub.info (Is our Fabry Awareness Gift Shop Online)

Please join our group on Facebook : USA Fabry Awareness Club

Here is some Education for the prices for each state for Newborn Screening:

The cost of newborn screening in Alabama is $125.57 per child.

Alaska charges an $80 dollar fee for newborn screening

Newborn screening tests cost $30 per child for the first screen and $40 for the second screen. The first screen will be billed to the hospital (typically included within the birth package) and the second will be billed to the responsible party, which is typically the child’s health insurance provider. If the parents are uninsured, they are billed for the fee. If the newborn is still at the hospital when the second screen is performed, it may be covered by the hospital.

Newborns covered by private insurance will have their $89.25 newborn screening fee paid for by insurance as mandated by Arkansas law. If the child is not insured under a private plan, Medicaid will reimburse the hospital for the test and the reimbursed fee will be in addition to the hospital’s per diem payments, if applicable.

Currently, the cost of the test in California is $102.75. Medi-Cal, health plans and most private insurance will pay for the test, which is included in the hospital bill. You will not receive a separate bill from the NBS Program.

The cost of the screening is $92.00, which covers the first and second screen. The fee is subject to change and is typically covered by insurance and Medicaid.  

How is Newborn Screening Paid for in ­­Connecticut?

The newborn screening fees are charged to institutions to cover all expenses of the comprehensive screening program including testing, tracking, and treatment. The fees are a minimum of $56.00.

How is Newborn Screening Paid for in ­­Delaware?

The newborn screen fee is$98.00 per infant/person. The fee is paid by the hospital of birth or birthing center. No newborn is denied screening because of the inability to pay.

How is Newborn Screening Paid for in ­­DC?

The cost for the NBS test is covered and not billed to the family.

How is Newborn Screening Paid for in ­­Florida?

Newborn Screening services in Florida are jointly funded through a $15.00 fee paid by birthing facilities for each live birth and the billing of the newborn screening tests performed by the State Laboratory. Medicaid and private insurance companies are billed but the Florida Newborn Screening does not bill families without insurance coverage.

How is Newborn Screening Paid for in ­­Georgia?

The Department of Public HealthThe science and practice of protecting and improving the health of a community, as by preventive medicine, health education, control of communicable diseases, application of sanitary measures, and monitoring of environmental hazards. charges parents a $50.00 screening fee. Screening services will not be denied to any Georgia newborn based on an inability to pay.

How is Newborn Screening Paid for in ­­Hawaii?

The Department collects a fee of $55 for each initial newborn screening kit. Most health insurance pays for the newborn test. No infant born in Hawaii shall be denied newborn screening testing because of inability of the infant’s parent or guardian to pay the fee for newborn screening testing. If you cannot afford the cost of the test, please call the Hawaii Newborn Metabolic Screening Program at (808) 733-9069.

How is Newborn Screening Paid for in Idaho?

As of July 2011, the cost of the two-specimen and NICU screening kit to medical providers is $58.00. Cost coverage of this item will be determined by your insurance carrierA person who has a change in only one gene of a pair and the other gene of the pair is working normally. Carriers typically do not display the symptoms of the condition, but can pass on the change to their children. or funding source.

How is Newborn Screening<!-- x -->Newborn screening is the process of testing newborn babies for some serious, but treatable, conditions. NBS can include a heel stick, hearing screen, and pulse oximetry. The conditions that newborn babies are screened for varies by state. Paid for in Illinois?

The NBS Fee is $88.00 per child. In addition to testing, the fee covers administration, follow-up services, and treatment. The Illinois Department of Public Health<!-- x -->The science and practice of protecting and improving the health of a community, as by preventive medicine, health education, control of communicable diseases, application of sanitary measures, and monitoring of environmental hazards. bills birthing hospitals or other entities that submit a sample for newborn screening, and does not bill private insurance or Medicaid directly. The hospital or submitter must then collect payment from the parent or responsible party. No mandates exist requiring separate coverage for newborn screening by private insurance or state-funded entitlement programs; this fee is usually included as part of the bundled reimbursement related to a birth. In cases of non-hospital, “home births”, the state newborn screening program does bill parents directly, which is usually paid out of pocket. In 2012, the cost may increase to cover new conditions screened for at that time.

How is Newborn Screening Paid for in ­­Indiana:

The fee for the screening is $85. The fee will be reviewed annually by the Indiana State Department of Health.

How is Newborn Screening Paid for in Iowa?

The screening fee is $112 and it will typically be included with all of the other costs associated with childbirth. The fee will be paid by the newborn’s parents using whatever means were used to cover the birth of their child.

How is Newborn Screening Paid for in Kansas?

Kansas is one of three states in the US that does not charge for newborn screening. The program is funded through the Children’s Initiative Funds and the Title V Block Grant.

How is Newborn Screening Paid for in ­­Kentucky ?

The NBS Fee is $53.50 for the initial newborn screen. The cost is the responsibility of the child’s responsible party. Kentucky law mandates health insurance coverage of every newborn if the mother is under their coverage at the time of birth. In most cases the newborn screening fee is part of the newborn stay in the hospital and not billed separately. Please note that insurance companies that are headquartered outside of Kentucky or those who are self-insured are not bound by Kentucky Insurance Law. The state does not charge the individual but rather the healthcare provider who submits the specimen. There is no charge for a screen that has to be repeated. The state does not cover the test if the patient does not have insurance. The test is “self-pay” in those cases and families should contact their healthcare provider to determine the fee.

How is Newborn Screening Paid for in ­­Louisiana?

The NBS cost is$30.00 per child.

How is Newborn Screening Paid for in ­­Maine?

Birthing Hospitals are charged $110.00 per infant, and includes any necessary retesting. Hospitals bill insurance companies for all routine care, including newborn bloodspot screening. Any further financial concerns can be directed to the program coordinator.

How is Newborn Screening Paid for in ­­Maryland?

The cost is $70.00 per child and is the responsibility of the birthing center or person responsible for having the newborn screening carried out, regardless if a newborn is born in a birthing center.

How is Newborn Screening Paid for in ­ Massachusetts?

The NBS cost is $68.74 per child and is covered by most insurances.

How is Newborn Screening Paid for in ­­Michigan?

The newborn screening fee is calculated each year and supports the laboratory costs of screening, follow-up, and medical management for infants and children affected by the disorders. The current cost is $87.03 (eff. Oct 2010) per baby. The cost is included in the hospital’s birthing and newborn nursery charges that are usually covered by insurance. If your child is born at home, a screening kit must be purchased. The fee can be waived for families with financial har

How is Newborn Screening Paid for in ­­Minnesota?

As of July 1, 2010, the fee in Minnesota is $106. Please call 517-241-5583 to see if you qualify for a free screening.

How is Newborn Screening Paid for in ­­Mississippi?

The newborn screening cost is$100.00 per screen. The Newborn Screening Program charges the birthing facility and not the infant/family.

How is Newborn Screening Paid for in Missouri?

Currently, a fee of $65 is charged for each newborn screening specimen collection card. This fee covers the cost of the testing and part of the follow-up costs. This fee is usually covered by third party payers, such as private insurance or government health programs. However, no individual in Missouri will be denied the newborn testing required by law because of inability to pay.

How is Newborn Screening Paid for in ­­Montana?

The newborn screening cost is $96.25. It will be covered by the state for those who are eligible for Medicaid benefits in Montana.

How is Newborn Screening Paid for in Nebraska?

The private laboratory charges the hospital $38.50. Most insurers, including Medicaid, cover the cost of newborn screening testing as part of the obstetric diagnostic related group charge. Hospital fees for collection and handling of the specimen vary, and are not regulated by the State Newborn Screening Program.

How is Newborn Screening Paid for in ­­Nevada?

The Newborn Screening Program is supported entirely with fees generated by birth registrations. Each person who is legally responsible for registering the birth of a child shall submit a fee to the Health Division of the Department Health and Human Services for each birth as follows: if paid on or before the 30th day after the date of the birth of the child, the fee is $71.00; if paid more than 30 days after the date of the birth of the child, the fee is $73.00.

How is Newborn Screening Paid for in ­­New Hampshire?

The health department has established a $71.00 newborn screening fee per child upon hospitals. A baby will not be denied this test due to an inability for the family to pay.

How is Newborn Screening Paid for in ­­New Jersey?

Initial newborn screening collection forms are purchased by birthing hospitals and midwives at a cost of $90.00 per form. These forms are purchased in advance and the cost is incorporated into the labor and delivery charges.

How is Newborn Screening Paid for in New Mexico?

The NBS cost for a mandated double kit is $89.00 per child. The single cost is $25.00 per child. If your newborn is covered by New Mexico’s Medicaid program, the costs will be taken care of by the state. No New Mexico infant will be denied testing if a parent cannot afford testing. The providers can contact the Newborn Screening program and each case will be reviewed individually.

How is Newborn Screening Paid for in ­­New York?

The mandated NBS is free for all families. All additional diagnostic testing<!-- x -->Testing performed after a baby has an abnormal newborn screen. This is the test that confirms if the baby has the condition suspected or not. is covered by your medical insurance, as is the case with any laboratory test.

How is Newborn Screening<!-- x -->Newborn screening is the process of testing newborn babies for some serious, but treatable, conditions. NBS can include a heel stick, hearing screen, and pulse oximetry. The conditions that newborn babies are screened for varies by state. Paid for in ­­North Carolina?

There is a $19.00 fee that applies to a laboratory test performed by the State Laboratory of Public Health. The fee is a departmental receipt of the Department.

How is Newborn Screening Paid for in ­­North Dakota?

The state Health Council adopts the rules that establish the reasonable fees for the newborn screening test. Currently the fee is $60. Facilities bill third party payers for this fee.

How is Newborn Screening Paid for in ­­Ohio?

The NBS Fee is $55.16 per child. In addition to testing, the fee covers administration, follow-up services, and treatment for certain conditions.

How is Newborn Screening<!-- x -->Newborn screening is the process of testing newborn babies for some serious, but treatable, conditions. NBS can include a heel stick, hearing screen, and pulse oximetry. The conditions that newborn babies are screened for varies by state. Paid for in Oklahoma?

The test costs $120.33 and is paid for by most insurances. A baby will not be denied newborn screening based upon a family's inability to pay.

How is Newborn Screening Paid for in Oregon?

The cost of the two-specimen newborn screening kit is $54. Most insurers, both public and private, will cover this cost as part of your newborn’s entire hospital bill. No Oregon infant will be denied testing if a parent cannot afford it. A parent or health care provider may request a fee exemption by sending in a “Statement of Fee Exemption” to the Oregon Health Authority (OHA) either on the specimen identification form or on a listing of exempt infants. Both must be given to the OHA within a year and after they receive it, they will issue a refund check. According to Oregon Administrative Rule OR ADC 333-024-0240, the statement must include the following:

STATEMENT OF FEE EXEMPTION:
The undersigned states that the parents of ________________ are unable to pay the fee for testing for METABOLIC DISEASES because of lack of sufficient funds.

________________________________________________
(Parent’s signature)

_____________________
(Date)

How is Newborn Screening Paid for in ­Pennsylvania?

Pennsylvania does not charge for screening for the inherited conditions required by law. Parents may choose to have their newborn screened for additional disorders at the same time. This screening panel is commonly referred to as supplemental screening. Supplemental screening tests may be covered by your insurance carrier<!-- x -->A person who has a change in only one gene of a pair and the other gene of the pair is working normally. Carriers typically do not display the symptoms of the condition, but can pass on the change to their children.. While most hospitals and birthing centers include the cost of basic and supplemental newborn screening in their rate and recover costs from insurers, it is possible that people using alternative birthing situations might be expected to pay for supplemental screening.

How is Newborn Screening Paid for in Puerto Rico?

The newborn screening panel<!-- x -->A list of conditions that a baby will be screened for after birth. Each state has its own panel. cost is prorated to every hospital for each sample submitted to our program for analysis. Each hospital is responsible for charging the patient for the newborn screening panel.

How is Newborn Screening Paid for in Puerto Rico?

The newborn screening panel<!-- x -->A list of conditions that a baby will be screened for after birth. Each state has its own panel. cost is prorated to every hospital for each sample submitted to our program for analysis. Each hospital is responsible for charging the patient for the newborn screening panel.

How is Newborn Screening Paid for in ­­Rhode Island?

The newborn screening fee is $118.02 per newborn. The fee is paid by the hospital or health care facility to the Health Department where the birth occurred in the absence of a third party payer such as a private health insurer.

How is Newborn Screening Paid for in ­­Rhode Island?

The newborn screening fee is $118.02 per newborn. The fee is paid by the hospital or health care facility to the Health Department where the birth occurred in the absence of a third party payer such as a private health insurer.

How is Newborn Screening Paid for in ­­South Carolina?

The NBS fee is$68.51 per child. This is billed to the medical provider (hospital, clinic, or physician<!-- x -->A person licensed to practice medicine, also known as a medical doctor). It is up to the medical provider to obtain payment.

How is Newborn Screening Paid for in ­­Tennessee?

The newborn screening cost is $75.00 per child payable to the Department of Health. The fee is waived for patients who are unable to pay based on information at the time of admission to the healthcare facility.

How is Newborn Screening Paid for in ­­Texas?

The newborn screening fee is $34.50 per child. Health care providers or facilities buy the specimen collection kit and it will be billed to private pay or insurance for covered patients. The Texas Department of State Health Services provides specimen collection kits at no cost to those covered by Medicaid and CHIP. DSHS is reimbursed by Medicaid, CHIP, and Title V.

How is Newborn Screening Paid for in Utah?

The cost of the newborn screening test is $93.00 per child.

How is Newborn Screening Paid for in ­­Vermont?

The newborn screening test is$95.00 per child. The Vermont Department of Health collects this fee to finance the costs of performing the tests, assuring appropriate follow-up, and administering the program.

How is Newborn Screening Paid for in ­­Virginia?

The cost for the Virginia Newborn Screening Program is$53.00 per child and is paid by the hospital. In the event that a fee is charged to a family and they cannot afford it, or is uninsured, they can go to a local health department to have it done for free.

How is Newborn Screening<!-- x -->Newborn screening is the process of testing newborn babies for some serious, but treatable, conditions. NBS can include a heel stick, hearing screen, and pulse oximetry. The conditions that newborn babies are screened for varies by state. Paid for in Washington?

The cost of the screening tests is $60.90, with an additional $8.40 fee going to help support the special clinics that provide services for families who have a child who tests positive for a condition. The cost is charged through the birth facility.

How is Newborn Screening<!-- x -->Newborn screening is the process of testing newborn babies for some serious, but treatable, conditions. NBS can include a heel stick, hearing screen, and pulse oximetry. The conditions that newborn babies are screened for varies by state. Paid for in ­­West Virginia?

The West Virginia Bureau of Public Health<!-- x -->The science and practice of protecting and improving the health of a community, as by preventive medicine, health education, control of communicable diseases, application of sanitary measures, and monitoring of environmental hazards. provides payment for the required screenings as well as any further referral or treatment services considered necessary.

How is Newborn Screening Paid for in ­­Wisconsin?

The birthing hospital, or attendant for out-of-hospital births, in Wisconsin purchases the blood collection card from the Wisconsin State Laboratory of Hygiene. Typically, the hospital will charge the newborn’s insurance for the cost of the card. If the family is not insured or cannot afford the test, there is a fee-exempt option available. The cost of the card is $109 as of November 2011. To learn the current cost of the newborn screening test, contact the newborn screening coordinator at 608-266-8904.

How is Newborn Screening Paid for in Wyoming?

The current fee for newborn screening in Wyoming is $70.

These are the Prices of each State for to have New Born Screening done. Money has the price tag on a person life.

Recent signatures

    News

    1. Reached 250 signatures
    2. Please Pass to your friends. To be heard we have to stand out and shout!

      Each everyone of our stories to need to be heard. We are each individuals and we each feel different with the Disease. Please share your story. Tell how crappy it makes us feel. What it takes away from our lives, our family and our children. People say how other illness makes them feel and they get that o' how can I help you.....well it is our turn. I am not asking; I am saying it is our turn to be heard; "We have Fabry Disease and It Sucks!" It eats your life away slowly and painful. Makes you feel your weakness in your knee when can be in the place your child. They have meds, be stuck and fun taken away from them. I am standing up for my 2 girls. Please stand up for yourself and your love ones and the ones that can't speak for themselves. Ann

    3. Please Keep Signing and Passing the Petition to friends and family.

      Thank you for ones that are support this Petition for Fabry to added to Newborn Screening Panel. You can help save a life. Just with a signature.-USA Fabry Awareness Club

    4. Reached 50 signatures

    Supporters

    Reasons for signing

    • Anita Kanitz STUTTGART, GERMANY
      • 7 months ago

      Be the change you want to see!

      REPORT THIS COMMENT:
    • Sharon Dufford MURPHY, NC
      • 7 months ago

      How could this not be important to me?

      REPORT THIS COMMENT:
    • Robin Gordon OAKLAND, TN
      • 8 months ago

      My son, two nephews, two sisters and I have Fabry Disease.

      REPORT THIS COMMENT:
    • STACEY GIERWATOWSKI DENVILLE, NJ
      • 10 months ago

      I want all kids to have a chance for afull life

      REPORT THIS COMMENT:
    • Tanisha Johnson JACKSONVILLE, FL
      • about 1 year ago

      This is important to me because after 10 years, my 21 year old son having a stroke and my 32 year old brother going into renal failure someone finally listened. Awareness is critical. I pray you all get the signatures you need.

      REPORT THIS COMMENT:

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