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Thank You for Sharing Your Stories...

Zoraida G., Camden NJ

I'm retired and my husband retired at the end of April 2009. Our health care came through his Union benefits. When he retired those benefits ended. The union is providing us $1,000.00 each year for the next 5 years to help defray our health care costs, but we are responsible for the rest. I fear this will not be enough to cover our health care needs for the next few years until we become eligible for Medicare. I have some health conditions that require long-term medication including arthritis, chronic stomach problems and glaucoma. Every eye doctor visit costs $200.00 and I should see the doctor every three months. The co-pay for three months worth of eye medication used to be $44.00 - I can't even imagine how I would afford the full cost of that medication if it was no longer covered under my retirement benefits.

I cancelled my doctor appointment in May, not knowing when I'll see the doctor again. I'm due for a mammogram (I'm high-risk for breast cancer) as well as a colonoscopy, an upper GI and an arthritis follow up. Thank God my husband's health is pretty good. The cost of COBRA was going to be $927.00 a month, which we cannot accept since it is going to be more than the pension check. We also own some rental properties in Camden, but still we cannot find affordable health insurance. I'm looking at options right now and there aren't many out there.

November 29, 2009

Natalio S. (Told by his father, Moraida S.), Trenton NJ

My son Natalio had a kidney transplanted when he was only 24 months old, which I donated to him. During his treatments he developed heart problems and asthma. He went for treatment at Children's Hospital in New Brunswick. He has had many health problems over the years, and he is now 12 years old and has received a second kidney transplant. He is receiving chemotherapy treatment at Cooper Medical Center in Philadelphia. Even though we have Medicaid it sometimes is hard for us to cover medications that insurance will not cover. Our family and friends help us with the expenses when they can.

November 22, 2009

Eric C., Trenton NJ

I'm 22 years old. In 2005 I was diagnosed with Ulcerative Colitis. Since then, I have had 4 surgeries, including a full colectomy. The diagnosis has changed to Crohn's Disease, a debilitating disease which has changed my life forever. It is an autoimmune disease, which means my immune system is over-active working against my body, causing severe diarrhea and inflammation of the intestine. As a result, to control the inflammation I am required to take medication that is given intravenously. After using other treatments, including oral medication, this one has proven to be the most effective. My condition has improved significantly. However, I must travel to Thomas Jefferson Hospital in Philadelphia (an hour away from my home) every two months for the treatment.

I was 17 when I was first diagnosed with this disease and since then I have been fortunate to be covered under my father's health insurance provided by his employer. However, at 22 years old I am worried about my time limitations under my father's coverage, especially since I still need another surgery to reverse the ileostomy, and down the road it is likely that I will need additional operations. I also have to continue taking my medication indefinitely. Affordable health coverage is a major concern for me. I worry about finding coverage. Given my preexisting health conditions this might be difficult, if not impossible.

November 12, 2009

Shawn McR., Trenton NJ

I'm 56 years old and my wife Pat is 51. We live in a 2 bedroom apartment around the corner from my church, Westminster Presbyterian. I've been a member there for 15 years. I'm a Deacon in the church, and we're developing a wonderful children's choir. When we were younger, both Pat and I had problems with drugs and alcohol, but we're both in a recovery community. We're trying to reclaim our lives with the help of our church.

I work full-time as a limousine driver and I earn about $35,000 a year, but I don't get health insurance through my work. Pat doesn't work — instead she cares for her 8 year old granddaughter and has gone back to school to get her GED. We don't have anything left over to buy health insurance.

I had a stroke 6 years ago, back when I did have health insurance. Pat has fibroid tumors. She needs surgery and we're trying to figure out a way to get that for her. We need a regular doctor to keep up with us, one who knows our history and can help us monitor our conditions. Instead, we have to use the ER. We have about $2,000 in unpaid medical bills from using the ER, and I can't afford to buy the medications I should be taking for my heart and high blood pressure. Sometimes I feel dizziness or fatigue. I've had a bad toothache for 2 months, but I'm just trying to ignore it — it would cost me $80 to get it pulled, and that's money we just don't have right now.

You work hard to try to get ahead, but the medical bills just push you back down. You can see why some people lose hope. We're a family trying to do the right thing, but we just need a little help so we can afford the health care we need.

October 27, 2009

Joe G. (Told by Stephen Tumolo, Director of Youth Ministry, St. Rose of Lima Catholic Community), Haddon Heights NJ

Joe Garcia was the father of a boy in my youth group and the trumpet player in our church choir. He gave everything to his family, his music, and his church. We worked together managing the meat department at a supermarket that suddenly went out of business.

With that job loss, Joe lost his health coverage. Soon after he was diagnosed with cancer, but his treatment was delayed as Joe struggled to get into a health plan given that he had a pre-existing condition. Joe died within 12 months. We will never know if he would have lived had his treatment not been delayed for six full months, but he deserved that chance. His son, wife and our church community all deserved that chance. We all miss him dearly.

It is unjust and unfair that health care is a commodity, sold only to those who can afford it. Children, the elderly, the unemployed and the sick need the same access to health care that the rest of our society receives. Providing access to affordable health care for all is the mark of a just and fair society.

October 14, 2009

Ron B. (Told by Rev. Heyward Wiggins, Pastor, Camden Bible Tabernacle Church) Camden NJ

I had a parishioner named Ron Butler. He was truly dedicated to serving our Lord — a regular at Bible study who always greeted fellow parishioners with a smile. He was a self-employed limo driver and never hesitated to donate his skills behind the wheel of our church van. Ron couldn't afford health insurance and, earlier this year — at the age of 56 — he started suffering from unexplained headaches, dizziness and stomach problems.

He went to a doctor who told him he needed some blood tests, which would cost him about $1,000 — out of pocket — for each test. He had to wait until he had enough money to pay for the tests before a doctor could tell him what was wrong. Meanwhile, the headaches and stomach pains got worse. The pain was unbearable. He had no recourse but to go to the emergency room for treatment...where he was turned away because he had no insurance.

A week later, Ron ended up taking an ambulance to the same hospital and was once again sent home without proper treatment. A good friend called and asked me to go check on him at his home. I found him disoriented and not very responsive. Two other church members helped me take him to another hospital. A few hours later I got a call — Ron had cancer. There were tumors in his stomach, in his lungs and in his liver. He had one tumor the size of a plum in his brain. Ron died four days later. I led his funeral and had to bury my parishioner, my friend, who died because he could not afford the health care he needed.

October 8, 2009

Mildred F.

As a retired health insurance broker with over twenty years of experience in the sale of group health coverage to business owners, I chose to deal only with very reputable, highly-rated insurance companies in the belief that I was acting in the best interest of my clients. Although by law I was required only to acquire sufficient continuing education credits to qualify for license renewal, I additionally made every effort to attend industry educational seminars to be even better informed.

Yet, I was unprepared when I learned that a long-time client, whose employees in the past had filed only routine claims for medical care, had had his health insurance contract canceled.

It appears that one of his employees, after having been diagnosed with cancer, had filed a claim which had triggered reexamination of her entire medical history. It was noted by the insurer that the reason for a doctor visit on the original application (which had initially been underwritten and approved) now, in retrospect, appeared suspicious. The insurance company determined that a reasonable individual would have sought follow-up care. (Of course, this was in retrospect.)

The insurance company therefore claimed it was within its rights to deny the claim and cancel the group contract. The business owner was refunded all premiums paid and was required to repay all commissions earned. So much for dealing only with reputable, highly rated insurers!

At the time, I consulted industry associations and was informed that this practice was not unusual and had been experienced by many other agents.

I was not privy to the cost for medical care incurred by the cancer patient, nor if financial considerations in any way dictated the extent of her care, but I do know that she died not long thereafter.

These events transpired over 25-years ago. If meaningful health insurance reform is not enacted now, those of us who believe we are well-protected from possible medically related financial ruin because we have health insurance coverage, will continue to live in a dream world.

September 24, 2009

Joyce M., Cranford NJ

I am 50 years old, married and have two children. I recently became unemployed. My husband and I both lost our jobs at the same time. We were owners and partners of a small business. The economic downturn devastated the company, forcing us to shut our doors.

After having always worked and had insurance my entire life (and using it primarily for routine yearly visits as we’ve always been very healthy), today, my family is without health coverage. I am in the process of enrolling my son Michael (14) and daughter Gianna (8) in NJ FamilyCare. Because private insurance is so expensive, we are unable to afford it. My husband just recently started a new job as a subcontractor for a financing company, but he will not be provided with health benefits at this new job.

This experience has been extremely difficult for my family. The stress and mental anguish has taken a toll on all of us. We worry about being able to pay the bills on time and buying basic necessities. We try to keep our children involved in regular activities to keep some normalcy in our lives. My husband and I have put off our yearly physicals and paid entirely out-of-pocket to cover the children's doctor visits. I need a mammography but I just have to wait. It seems unfair and unreasonable that America, the richest country in the world, treats us this way, without respect and dignity.

September 23, 2009

Lauren Agoratus, Newark NJ

My name is Lauren Agoratus and I am a parent and advocate. I am the NJ Coordinator for Family Voices, a national grassroots network speaking on behalf of children with special needs and our NJ Chapter is housed at the Statewide Parent Advocacy Network (SPAN). I am also the volunteer NJ Caregiver Community Action Network representative for National Family Caregivers Association for caregivers across the lifespan.

My daughter Stephanie was born with end stage renal disease and spent her first two weeks in the neonatal intensive care unit at Children's Hospital of Philadelphia hooked up to a heart monitor, respirator, IV, and feeding tube and was not expected to survive. Her first NICU (neonatal intensive care unit) bill was $28,000 for 11 days. We were an unusual family in that prior to our child's birth we had no credit card debt, no car loans, and student loans were paid off. Although we were frugal, we had to put our mortgage on a credit card until we caught up. Despite this, that first year we were $20,000 in debt due to lost wages and medical bills, so we almost lost our home.

We tried applying for SSI (Supplemental Security Income) but were initially told she "wasn't disabled enough" despite receiving speech, occupational, and physical therapy. She also had feeding/choking problems and was using adapted highchairs, gastrointestinal reflux positioning techniques, and as well as multiple medications, food thickeners, and caloric supplements. She weighed 10 pounds at one year of age. Stephanie was literally in survival mode the first years and was homebound as medically fragile until almost age 6. But she "wasn't disabled enough".

Our first struggle with insurance was when she was over a year old and not sitting, crawling, or standing. Initially not able to access early intervention until the next fall we started the first 4 months with physical therapy privately. We consulted the primary and secondary insurance employee handbooks which showed physical therapy was covered, and called both to verify over the phone, and followed the guidelines regarding the therapist's certification and doctor's note. After we submitted the claim, it was denied. It took a year and half to appeal and we won. I've had 6 other claims for other services that I've had to appeal, some also for a year and a half, and we've always won. Insurance companies depend on people "going away" and only one third of families appeal.

At last count, our out of pocket expenses for therapies not covered by the medical or education systems was $18,000 over two years. Health care reform for children, particularly those with special needs, is desperately needed.

September 22, 2009

Jim C., Dover NJ

I am self-employed and remain without health coverage because I'm forced to give priority to urgently needed, major dental work. I'm facing many thousands of dollars in dental expenses, beginning now in 2009 and continuing through next year. So I can not afford health insurance — like so many millions of other Americans.

August 18, 2009

Sue D., Plainsboro NJ

I am on cobra but I cannot afford it anymore. It costs me $523.00 each month. I want affordable health care. In NJ there is an individual plan offered by four insurance companies all of which are expensive and offer "barebones" coverage. I need affordable health insurance right now or I will be without any insurance. I am scared to go to the doctor because I do not know how long I will be able to maintain my health insurance.

July 8, 2009

Tina G., Newark NJ

My brother needs surgery and he works only part time and his health insurance don't cover surgery so he goes to a surgeon and the surgeon lets him fill out an application for credit for a loan to get the surgery and the loan company denies him due to a recent bankruptcy so now he has to work with this big thing growing out of his neck and possibly the core growing into his spine and crippling him for life then they'll give him ssi but for now its sorry no money no credit no surgery does that even make sense in a counrty where we pay for everyone who dont work to get care and for their families then those of us who work cant even get our families taken care of wow shame on america.

June 16, 2009

Lillian U.

I recently heard that the 2010 State Budget has in it the addition of co-pays for HIV/AIDS drugs under ADAAP. This could be a death sentence people with HIV who are living in poverty. In hopes that it may help to prevent this from remaining in the budget, I would like to share my story with you.

My former husband, Ruben Rivera, was HIV+. He has died since the events that I will share with you.

When we came together we were earning a joint income of $18,000, working for the church. We also had primary care of my young grandson, but no financial support for it, due to the circumstances. Our bi-weekly gross income was about $690. By the time we paid our basic bills of rent, PSEG, groceries, phone (which WAS a necessity due to Ruben's illness), we had between $20 and $30 left for two weeks. This needed to be used for gas for the car (praying that the car would not break down), plus toiletries, household items and any unexpected expenses. We were very blessed when we were able to take my grandson to McDonalds or get Chinese takeout once or twice a month.

In spite of being sick much of the time, Ruben began detailing cars part time to bring a small additional amount of money into our home.

At that time, Ruben was taking five HIV medications. If we had to pay $6 for each of those medications, it would have meant $30 less a month for our other essential expenses. Several things may have happened;

* We may have cut back on paying for a utility bill or rent, or
* We would have had to get more assistance from food programs that help those in poverty, IF it were available, and/ or
* Ruben would have stopped taking his medications.

Given the commitment that he had to supporting his wife and grandson, I am fairly certain that he would have stopped taking his medication. This would have meant an earlier death.

It may seem to legislators that $30 a month is very little money to be expected to pay for medications that are needed in order to sustain life. It is not very little money when you are a person living in poverty or slightly above poverty. It means that you will have to give up something essential to basic living. This is not theoretical for me and for thousands of others. It is real.

While our situation was difficult, I know people who were making ends meet on less income and taking AIDS medications. It most certainly would have meant homelessness, hunger and/or death, perhaps all three, for them.

Please do whatever you can with other advocates to make sure that this change in ADAAP does not remain in the 2010 budget.

Thank you. God bless you.

April 15, 2009

Diana A.

My husband and I are parents with children ranging in age from 16 to 32. Our oldest son and his wife have a two-year old daughter. His wife was just laid off, losing her health insurance. Their daughter is covered by the State Children's Health Insurance Program, but they do not have insurance for themselves. So when they are sick, they can't go to the doctor, but once she catches it, they can take her to the doctor!

One of our two daughters has special mental health needs. She requires two medications a month. We have health insurance through my husband's work, but our health insurance company says that the medications her doctor says she needs are not on their formularies. If she was prescribed the generic medicine, we'd "only" have to pay $25/month each ($50/month total), but instead we have to pay $50/month each ($100/month or $1,200/year). And that doesn't include our co-pays for doctor visits, lab work, etc. Because her therapists are not in our network, we have to pay 100% of the cost of those visits. They actually charge less than some of the therapists that are in the network, but none of their costs are covered simply because they are out of network.

And of course we can't change health insurers because I'm a survivor of ovarian cancer — and that's a pre-existing condition!

My mother lives on SSI and Medicaid. She had to be hospitalized at least four times in one year, for weeks at a time, before they agreed to provide her with a home health aide to be with her a few hours a day to help her out and make sure she takes her medicine.

But my story pales in comparison to the stories of the many families we help at the Statewide Parent Advocacy Network, home to New Jersey's Family Voices chapter and Family to Family Health Information Center. We work with families, many of whom have children with special healthcare needs, who are often uninsured, underinsured, or were insured but lost their insurance due to losing their job and being unable to afford COBRA payments.

Families like Kia Moore, whose child is underinsured even though both parents have private insurance and their child has Medicaid; or Alison Torres, whose private health insurance carries a $1500 deductible that they need to meet before the insurance will pay 80% of what her three children's therapies cost, and they only cover 26 visits a year; or Barbara Nemeth, whose son has a tracheostomy, a feeding tube, and is on a ventilator at night, receiving 16 hours of nursing per day through two private insurance companies, who was called at work last week and told that his nursing benefits would be decreasing to 12 hours and that she had less than 24 hours to make other arrangements; or Dianne Malley, who is having her third Medicaid fair hearing this month to keep her skilled night nursing services and who is struggling to find somewhere that will take Medicaid to get her daughter new hearing aids; or the Krupp family, a young widow with two young children who lost her husband at the age of 39 to cancer, whose COBRA expired, and who is currently working as a consultant and is ineligible for health benefits through her employer and is paying over $800/month for private insurance for her family; or Irene Druskin, who has a 19 year old with Asperger Syndrome, who has no health insurance for herself and who cannot find a doctor that accepts her son's Medicaid, so they both often go without treatment, and who lives paycheck to paycheck.

All of these stories and others like them are in our Family Healthcare Story Book available online at www.spannj.org. And these stories don't include the stories of undocumented immigrant families who are not eligible for any health insurance. That's why the Statewide Parent Advocacy Network is a member of Health Care for American Now-NJ, and, as a non-profit employer, a member of the NJ Main Street Alliance. Our current health care system does not work for children or families, especially families who have children with special healthcare needs. But together families, professionals, and policymakers can change health policies and practices so that every child and family has access to quality health care in New Jersey and in our nation. For more information or to join us, contact us at (800) 654-SPAN or familyvoices@spannj.org.

April 15, 2009

Stan J., Social Worker, Virtual Early Intervention Program

I am working with a family who have an almost two year old with quadriplegic cerebral palsy. Before the dad lost his job in February, they made too much money to qualify for most Medicaid programs. We applied for the DDD Medicaid waiver program, for which they would have qualified, last June. We were told that the program had been terminated by the state. This was confirmed in a face to face meeting last October and in a subsequent letter in November.

The family has outstanding medical bills of around $4,000.00. The NJ Department of Human Services told us to contact Medicaid. So far, they have been unable to help. The crux of the issue is that the state chose to shut down a program for providing health insurance (and case management) within DDD without first ensuring that a comparable program was created within Medicaid. This has left many families in a dire situation. Meanwhile, I have reapplied for Family Care for the family in order to get current health insurance coverage.

April 15, 2009

Katie B.

We are a family of six, 2 parents, a 9 year old boy, three 6 year old girls, one of those with mild cerebral palsy, and all the issues that go along with that. We visit her pediatrician, eye doctor, orthopedist, enterologist, orthotist for brace construction, and the dentist. We have private insurance that we pay for through my husband's employer with large deductibles. We should be getting other therapies for her that we must forego, because we have other children with general health needs as well that need the check ups, the dentist visits etc. As parents we too are a bit older and our healthcare needs are growing as well.

April 15, 2009

Irene D.

I have a 19-year old with Asperger Syndrome. I don't have health insurance.

My son has Medicaid and I cannot seem to find a doctor that accepts his insurance. He has some health issues as well and we often go without treatment. Unfortunately, I work and cannot afford to take time off to come to the meeting. We basically live paycheck to paycheck.

April 15, 2009

The Moore Family

Kia Moore is the single parent of Xavier Hylton, age 20 months old, who was born with double kidney failure. At 8 days old he was admitted into the hospital where he stayed for 69 days. Currently Xavaier is on dialysis seven days a week, 16 hours a day. Practically since his birth, Kia has had major problems with insurance coverage and benefit coordination.

Kia's son has double private insurance from her job at American Express and from his father's job. Because he was born with full renal failure, he is automatically qualified for Medicare. However, when she tried to get Medicare benefits for her son in Camden County, no one seemed to have heard of a child being in full renal failure at the time of birth and kept asking her questions about whether or not he could work — and he was only 7 days old! He also should have been automatically qualified for SSI and SSDI as he is totally disabled, yet when she went down to apply for SSI benefits for him, they would not qualify him for disability benefits based on her income.

Kia expressed her frustration with trying to get health care for her son. She has Blue Cross Blue Shield (BC BS) while Xavier's father has Aetna. Initially Aetna was the primary coverage, but she switched so that BC BS is the primary. She had to go all the way to the NJ Department of Banking and Insurance to make it happen.

It took over a year to get coordination among the insurers. She needed to go through this process because Aetna refused to cover Xavier's kidney transplant. They wouldn't allow him even to be tested as long as it was coming through St. Christopher's Hospital for Children. Aetna said that Xavier had to go to another hospital and select a whole new medical team of doctors and work with them for a minimum of six months before they could certify him for a transplant.

"Here I had a child in critical need for a transplant who was finally big enough to get an adult kidney and they wanted me to go to another place where they could get the best deal! He can not have any transplant that requires steroids; only three hospitals in the country, including St. Christopher's, do steroid-free transplants and Aetna doesn't have a contract with any of those. All Aetna kept addressing in the 3 appeals is denying it is based on continuity of care and offering to let us go somewhere else. They never said anything about his care being managed by the same team since he was a newborn and they never addressed the need for a steroid proof transplant."

Xavier had the surgery, and nursing care was coordinated prior to discharge. Aetna was paying for the nursing care. Then Aetna sent a letter to the hospital saying that they were going to drop the nursing care because he didn't need it. "Your health carrier says you have an unlimited benefit for private duty nursing but we choose to limit it even though your doctor says you need it so, now I have to go and tap a benefit from the state to cover those missing hours; if my policy says I'm entitled to it, I should have it and have it without hassle." After much advocacy, Aetna agreed to cover private duty nursing, but only for 12 hours/day, even though the doctors all agree that he needs a minimum of 16 hours/day. With the help of her county Special Child Health Services Case Management Unit, she was able to get a nursing care waiver to pay for additional nursing hours. Thankfully, Kia's job is allowing her to work at home to take care of her child; otherwise, she would have to quit her job.

April 15, 2009

Mary Ann E.

My oldest daughter Bridge became ill at seven months of age. As a result, she is a quadriplegic. For the first few years after getting ill she spent time in and out of hospitals. Over the last six years, Bridget has participated in Early Intervention, Preschool Disabled, and currently her local public school. She continues to have significant health needs and requires ongoing skilled care.... She has participated in every available therapeutic intervention, including some clinical trials on major rehabilitation facilities.... Canine Companions have provided Bridge with a service dog.

Bridget is the second of four children, and until Bridget became ill both of us (her parents) were working full time. Bridget's significant health needs have necessitated that one of us remain home and be available to her. We have had to make significant adjustments based on her level of need.

April 15, 2009

The Grejda Family, Riverdale NJ

Maria and Dave Grejda live in Riverdale in Morris County. They have four children, the oldest of whom are twin boys, Kyle and Justin, born 1/1/99, who were born with extreme prematurity and many severe health problems.

After discharge from a NICU at Children's Specialized Hospital, Kyle was on a state waiver program for private duty nursing care because he had a tracheotomy and ventilator. They each required early intervention and extensive rehabilitation and saw numerous medical specialists. They required pre-school disabled education in an out of district placement and have returned to their school district for elementary special education services.

Their father was recently laid off from his job and the family pays over $1,100.00 per month for COBRA. They don't dare give it up due to health care needs. Kyle had extensive orthopedic surgery in Minnesota last year and is returning for additional surgery this year. Justin also had surgery. The family has two applications pending with the NJ Catastrophic Illness Relief Fund in Children but expended many funds out of their own pocket and borrowed from family members.

April 15, 2009

Nicole H.

When you plan a family, nobody ever expects to have a baby that would end up with 15 specialists at Children's Hospital of Philadelphia (CHOP) or any hospital — but that is my reality. My nine-year-old boy has been through more than most of us goes through in a lifetime. He is a fighter & I thank God for him, but my experience with the healthcare system has been torturous at times.

I purposely tried to have most of his specialists at CHOP (rated #1 for several years) so that there would be a constant communication between all of his doctors. That is not what I have experienced at all. I have to convince the doctors that they need to talk to each other. The doctors will say to me, 'Well, I sent the report to them, they haven't gotten back to me.' I then will ask them, 'Could you follow up with them?' and the general response is 'Well, I already sent it.' So I am the one to speak with the other specialists to try to get them to track down the report and deal with the situation.

In the midst of them not communicating, my son at times was getting worse. The situation that frustrated me the most was when medical tests would be scheduled and we would get them done and then one of the specialists would say, 'I wish I knew because he needs more blood drawn.' So instead of being pricked once, it could be 2 or 3 times because they didn't communicate. Or when one doctor disagrees with another — instead of them talking — I have to decide which one is right. I have become my son's doctor and I am the one to say yes or no to procedures. I didn't get a degree in this field but I have no choice but to make the decisions.

Another issue is insurance. Most of the time, it takes 6 to 12 months to get into a specialist for the first time. You would think after all the time parents have waited for appointments in the hopes to help their child the hospital would make sure all the information about insurance, referrals, prescriptions are in order. That isn't the case. My friend waited 12 months for a Neurology visit. She ended up getting stuck in the Horizon saga with CHOP (Children's Hospital of Philadelphia). She thought it was resolved and when she went to the appointment she was told that they would have to cancel because it wasn't the commercial Horizon but the Medicaid one. When in desperation, she asked for help they said there was nothing they could do and that she would have to reschedule. She said to me — I can't believe I am going to have to wait again.

Hospitals forget that parents are dealing with their child and all of the medical aspects that go with that — they need help — not more frustration.

Through all of trials and appointments I have learned to become my son's doctor, nurse, psychologist, insurance expert, time manager, protector, school advocator, and administrator for all the appointments, insurance questions, referrals and most importantly I am his Mom. My son had 65 doctor's appointments this year and that was less than the following years.

This past year was the first year that CHOP offered me help in the sense of a child specialist, in case, my son needed someone to talk with and help him through all his procedures. I was amazed that now — now I am told about this service. I also have never received help organizing his appointments through the years or making sure doctors communicate. There is a lack of organization and consideration for the families. Medical community should be considering these problems and going out of their way to help families so the families can concentrate on the real problem their child.

April 15, 2009

Jessica K.

I speak with families on a daily basis on many different issues. Many of the issues involve our healthcare system. Just last week I was in our lobby and a mother was sitting there crying. I approached her and asked her if she was okay.

She broke down sobbing horribly to me and said that her second child who was diagnosed with Autism has been denied for speech therapy by their insurance companies.

WHY???? Why are these children being denied???

Don't insurance companies realize the earlier the intervention the better chances so many children have to become taxpayers in the future?

Why do kids with developmental disabilities get punished because they were born with a disability???

My children were born with a piece of their chromosome missing and were unable to get therapy because it was considered 'developmental.'

It is not bad enough that our children will never be able to live a 'normal' life. My passion for this issue is great and I would love to sit down with anyone and discuss healthcare issues.

April 15, 2009

Mary K.

My sister is a young widow with two young children. She lost her husband at the age of 39 to cancer. They were not eligible for insurance through Kenny's company once the COBRA had expired. She is currently working as a consultant and is not eligible for health benefits through her employment.

I have tried to get her benefits through but have been faced with many legal issues. The cost for private insurance for herself and her 2 kids is more than $800 a month and it is becoming more and more challenging for her to find a way to make the payment. She had not been eligible for NJ Child Health insurance in the past and began paying for private insurance. She would be eligible for health insurance under the new pay scale guidelines, however, she was told that she would need to drop her insurance and be without health insurance for six months in order to qualify.

This is not a realistic expectation for a single woman with two small children. The thought of being uninsured is scary to someone who already knows the hardship of tragedy.

The fact that I have not been able to help my sister who is living on a very modest income saddens me. I know her story personally and am sure that there are many other families in the same position that she is in.

April 15, 2009

The Micheletti Family, Hunterdon County NJ

The Micheletti family lives in Milford, NJ in Hunterdon County. They had to fight all the way to the appellate court to get medically necessary treatment for their son Jake.

On January 17, 2007, two separate decisions by the Appellate Division of the Superior Court of New Jersey reversed decisions by the State Health Benefits Commission (SHBC). In those earlier decisions, the SHBC had declined coverage for Occupational Therapy, Speech Therapy, and Physical Therapy for their two children with autism.

The SHBC denied requests for services based on its interpretation of non-restorative exclusions contained in the Members Handbook: The plan does not cover services "that are rendered with the primary purpose being to provide the person with...a service or supply that is being provided to promote development beyond any level of function previously demonstrated." SHBC argued that because the child did not have certain speech or functional skills that were fully developed, they were not obligated to provide service to restore those skills

In the case of Walter Mankiewicz v. SHBC, the Appeals Court noted that the SHBC recognized autism as a biologically-based mental illness (BBMI), and that the child suffers from it, and that the therapeutic services were medically necessary. Nevertheless, it denied coverage for these services.

In reversing the SHBC, the Appeals Court decisions held that the denial of occupational, physical, and speech therapy for children with autism went contrary to the NJ Mental Health Parity Act, which specifically names autism and Pervasive Developmental Disorder as covered conditions. The Appeals Court in Jacob Micheletti v. SHBC said that the motivation and spirit of the parity statutes is to afford greater coverage to those afflicted with BBMI.

In the Micheletti decision, the Appeals Court made note of a 2005 NJ Department of Banking and Insurance position stated in discussing the Mental Health Parity Act and whether insurance carriers could exclude therapy services for children who are not developing typically: "To allow carriers to exclude the primary mode of treatment for autism and PDD (speech, occupational and physical therapy) would render the statutory directive meaningless and therefore, it cannot be permitted."

In the Micheletti decision, the Appeals Court held that the prescribed treatment of occupational and speech therapy were traditional, not exotic or wasteful of resources. It also took issue with the SHBC decision to exclude "non-restorative" services, saying, "The words 'restorative' or 'non-restorative' when used in this context are also ambiguous and largely inapplicable to infants and young children. Every child is born with the potential to develop those skills necessary to life in society. Autistic children and other children afflicted with BBMIs are hindered from achieving that potential." To read the entire decisions, go to www.judiciary.state.nj.us/opinions/index.htm and find them under Appellate Court, Published decisions for January 17, 2007.

April 15, 2009

Barbara N.

I received information that you are looking for families that can tell their thoughts and concerns about healthcare. In March, 2007, my son was born with multiple medical problems. Zachary has a tracheostomy, a feeding tube, and is on a ventilator at night. He receives 16 hours of nursing per day. Zachary actually has 2 private insurance companies.

My most recent experience was 2 days ago when I was called at work and told that his nursing benefits would be decreasing to 12 hours and I had less than 24 hours to make other arrangements. I was also told by this insurance company that I should not be working and that I needed to apply for Medicaid for my son. I also have a 9 year old daughter who is hearing impaired and has an auto immune disease (vitaligo) and I can't get equipment to treat the skin condition because they consider the treatment cosmetic.

I have so many other experiences also especially since I am dealing with two different insurance companies and trying to coordinate benefits.

April 15, 2009

Adam P.

My wife, Amy, and I realized our son Benjamin was autistic last summer, and he was officially diagnosed shortly thereafter...Over the next nine months, we confronted the usual emotional hurdles of fear, anguish, sadness, and then total resolution to help our son. We worked tirelessly to research, make doctors' appointments, arrange therapies, and act quickly as though Ben had a traditional "life threatening" illness...We wanted to objectively try methods with little downside that may help Ben, and if they did, then we'd continue them.

So far, many of the traditional OT and speech therapies that are recommended for autistic children have indeed helped. I see it everyday. He's improved dramatically. Like so many, we have found that financing an autistic child is a challenging and emotionally draining process. Most of the therapies that help our son are not covered by insurance, and in our case the cost has been over $13,000, and will certainly increase annually. We've had to make a few sacrifices, but are able to get by. Yet, I'm sure there are many in this economy that cannot.

My hope over the coming years is twofold. First, that there will be greater research, awareness and understanding. With this understanding will then come the realization that many families with Autistic children won't be able to provide what these kids need due to this financial hardship. My hope is that government officials such as Senator Menendez, advocacy groups, and most importantly, parents, can all work together to help.

April 15, 2009

Allison T.

We are a family of five struggling on one income to survive. We have three children diagnosed on the autism spectrum. All three of our children have private insurance through my husband's job and the three children receive Medicaid through social security insurance. We continue to have many trials and tribulations with getting appropriate coverage for the services my children need. I would like to share our stories with Senator Menendez so that he can know the importance of public health insurance and the loop holes that Medicaid currently has in provided needed coverage.

The worse part of our private health insurance is that we have a $1500 deductible that we need to meet before the insurance will pay 80% of what therapy costs, and they only cover 26 visits per year. With three kids receiving therapy, Gabriel five times a week, Nathan five times a week, and Benjamin three times a week a 20%, our co-pay is really expensive. We cannot afford to take our children to get the therapies they really need.

Our children get Medicaid through SSI. At this time Medicaid picks up our co-pay but two-three months every year Medicaid is suspended. Those months we have to cancel all therapies and our children go without. Also, our private insurance does not cover things like orthotics or diapers through their durable medical department. Through Medicaid, diapers and orthotics are covered but again we lose these benefits for two-three months per year. I am still trying to get our private health insurance to cover ABA therapy but every time I send them documentation they ask for, they then ask for something else, thus dragging it out until I give up (which will be never).

With insurance paying for the much needed therapy my children are progressing. When it comes to the two-three months they go without we can see the regression.

April 15, 2009

Lorena G., New Brunswick NJ

I have been having an on-going problem with my health insurance provider, Aetna. My difficulty stems from a contracted third-party working for Aetna called Orthonet of New York. Orthonet has been negligent in submitting the Explanation of Benefits (EOB) for my approved physical therapy claims with Sports Physical Therapy Institute (Somerset, NJ) between July — August 2008.

The difficulty also stems from the fact that last year Aetna added another third party billing service to my insurance called Direct Pay. Direct Pay requested that all of 2008's claims be submitted by March 31, 2009. This has not happened. With this new system I am required to have an EOB from Orthonet for each of my medical visits, which I then need to submit to Direct Pay.

I have been calling Aetna/Orthonet for the past month trying and obtain the correct EOBs. Aetna/Orthonet has sent me three different copies of EOBs, all of which are wrong because they include a co-pay amount. Aetna has tried clarifying with Orthonet that my coverage does not include a co-pay but rather has a deductible and each time Orthonet (via my insurance Aetna) has assured me they will re-submit the claims properly, only to result in Orthonet re-submitting them incorrectly yet again.

This extra layer of bureaucracy is challenging for a consumer to contend with. As a full time graduate student at the Rutgers School of Social Work, a part-time case worker, and an Eagleton Fellow working for the Division of Mental Health Services in Trenton, my time is extremely limited. It is outrageous that my claims have been mishandled for over a month (I began calling in February to try and clarify this problem). I want to alert the public to the injustice of this insurance industry in handling cases of working families who do not have the time required to handle the mess made by these inept insurance providers.

Today I had enough, I asked to speak to a supervisor, to which the Aetna representative who has been assisting me, replied that I am "only a member" and a supervisor would not speak to me. The Aetna rep said I would have to find the agent from my employer that deals with our insurance. I work for a community based non-profit called Elijahs Promise in New Brunswick. We don't have the staff capacity to deal with these kinds of problems and I am not one to pass the buck.

Unfortunately, I have hit a wall. I recently wrote to my Congressman, Representative Pallone, for help. As a result of all of the hold ups from Aetna/Orthonet, I have now had to petition my employer and Direct Pay to extend the end date for submitting claims from 2008. I am awaiting a decision on this request.

Aetna/Orthonet needs to be shamed for what they are doing to people. I am supposed to continue with physical therapy but have been unable to do so because Sports Physical Therapy told me they could not see me again before the outstanding claims are resolved. The Aetna rep also made me aware that I am one of many customers whom she has been trying to help with claims that have been botched by Orthonet. I think we may be looking at a class action lawsuit if that is the case.

This is just one example of many that frustrated citizens such as me are experiencing. We are fed up with the greedy health insurance industry. I am more than ever committed to a single payer health care system because health care should not be a privilege or a hassle but a basic human right for all people. I would be glad to testify at any hearing that may be held about the problems that I have experienced with health insurance providers.

April 8, 2009

Claire J., Red Bank NJ

My husband is about to go on Medicare and for the past 6 months we have reviewed all plans available and even though we both have college degrees we are not able to make an informed choice of which plan to choose.

What would you tell your mother to do? Which insurance is the best for us old folks?

March 16, 2009

Jack Z., Freehold Township NJ

My wife and I, residents of Freehold Township and both under the age of 65, are retired from our respective jobs as a State employee and public educator. Unfortunately, we didn't work enough years to earn health benefits, so now we are paying, under Cobra-elect, $1,068 per month for benefits.

We don't go to doctors often (knock on wood!), so we would be perfectly happy to pay a portion of that sum just to get catastrophic insurance and pay regular doctor's visits and prescriptions out of pocket.

However, we have learned that here in New Jersey, this is impossible because the health insurance companies must take all clients without pre-existing medical conditions.

So that means that we (my wife and I, and others like us who are relatively healthy) are paying for everyone else. Just like automobile insurance.

This is not fair. Why don't we have the option to buy good catastrophic insurance — when I say good I mean with a choice of hospitals and unlimited lifetime be nefits, as many do — for a reasonable price ($300, $400 per month per couple?) and leave doctor's visits, medical tests, and prescriptions out of pocket?

I simply want to pay for what I get.

It would be one thing if all Americans were receiving health insurance and, as a result, I had to sacrifice my own needs, which I would be more than willing to do. But that is not the case. I feel trapped and ripped off.

March 5, 2009

Michael D., Marlboro NJ

After suffering from Angina, I had a Thalium Stress test that indicated there was a severe blockage. My doctor brought me in for a Cardiac Catheter.

During the procedure he found three blocked arteries, and one was at 95%. He had a stent inserted in that artery.

He requested that I come in within 4 weeks for another stress test to determine how the stent was doing, and to see if the opening of the artery provided me with sufficient blood flow.

The insurance company (Blue Cross Blue Shield of NJ) denied coverage for the stress test. Apparently it is not important that I find out if the one stent implanted was sufficient to keep my heart supplied with blood.

What is apparently more important is that they don't spend any more money on my health problem.

January 5, 2009

Marilyn Q., Thorofare NJ

I am 61 and work full-time with good health insurance coverage from my employer, due to a very good union. However, I am concerned about my daughter, who works in New York State.

She is planning to continue working 4 days a week and do some studying in order to be certified to do something in addition to what she already does. She is a massage therapist 4 days a week and hopes to either become certified also in yoga instruction or begin study in a related field.

She has had no health coverage for the last 6 years. She does not go to a gynecologist. (Her fiance works but has no health insurance either.) We have done a lot of research on policies available for her to buy as an individual. It appears she would have to purchase a fairly expensive product, which may or may not cover preventative care or maternity care.

I would have to help her with the premiums. Until we get this, I live with the fear that she might incur major medical expenses.

If that should happen, I would try to pay her bills, even though it would mean depleting or eliminating my retirement assets.

I hope to retire in about 8–9 years (at age 70) and my husband and I have worked hard to save for it. However, in order to get good medical care for my daughter, I would willingly become bankrupt. I know other people in the same position.

Many young adults do not have health insurance. Why does this situation exist in the U.S.? I have lived abroad in both Germany and Japan, and I know that their systems are not perfect, but they are far more equitable and effective than the American one.

Something has to be done.

December 5, 2008

Dianna H.

Unfortunately my mother-in-law passed away 2 weeks ago. She had been ill for over a year and the 6 hour round trips to Bernardsville, NJ were difficult. Helen was 94 and was blessed with enough money for her end of life care to be given in her own home, most of us are not.

Unfortunately, I learned even more about our lovely healthcare system. I was totally shocked, and I have 40 years in the business!

"The High Cost of Dying @ Home"

The cost to sustain Helen Anne in her home of 50 years, with dignity, 24 hour care, food and amenities, began at $77,000.00 per year. There was a Do Not Resuscitate Living Will posted conspicuously on the wall. That was sad. Even as a veteran RN Case Manager, fully aware of the need for such a directive, it was so — "in your face" sad. No medication or "exceptional clinical care" was ever given. Hospice had been initiated. Medicare covered Podiatry visits and "Durable Medical Equipment." A home care "person", costs a "mere" $5.50/ hr. Multiply this by 24 hrs/per day, 352 days per year, and you have: $46,464.00. Adding food for the patient and care giver, food supplements (like Ensure and laxatives), special, bacterial cleaning products, diapers, pads, personal products and other chronic or clinical care items at approximately $26,400.00 — costs grew to a staggering $72,864.00.

Oh, and I forgot heating, air-conditioning, water, lighting and gas bills (cooking), Cable TV, taxis for the caregiver's free time/exercise trips to the Mall (2 to 4 times weekly), property taxes, routine exterminator service, plumbing services, professional carpet cleaning, snow removal for the safety of the caregiver and ambulance trips to the doctor's office, etc. This adds another $6,600.00, more or less. More, more, than less, I assure you.

Sub Total: $79,464.00

Burial costs were $14,000.00. (Grave and headstone were pre-paid at the time of my father-in law's death.)

Grand Total: $93,464.00

(Apparently neither my husband, nor I can afford to die.)

October 16, 2008

Jason W.

To All That Fight for Healthcare Coverage We Deserve:

Thank you for creating a venue for the public to fight our embarrassing healthcare system as we know it. I will attempt to be as brief as possible but it is extremely difficult.

Initially my sister-in-law was rushed to RWJH on January 18th of 2007 for a seizure and had been diagnosed with a brain tumor. My wife, while sitting on her sister's bed during recovery from brain surgery, went into a Grand-Mal seizure while 29 weeks pregnant.

My insurance company BCBSNC was, and has been, a night-mare to deal with. The stress and full time job of caregiving while fighting insurance has left me exhausted, depressed and dealing with P.T.S.D.. It eventually forced me to go on disability myself.

We have a beautiful daughter and my wife was diagnosed with an inoperable high grade brain tumor. She subsequently became 90% paralyzed, developed a cyst on her tumor that caused her to lose speech that required 2 additional surgeries. She continues to suffer from (almost daily) seizures and cannot be left alone. Although she has functionally improved to about 15% paralysis on her right side, the amount of time and effort I spent to get a Home Health Aid covered took a mental and physical toll that is beyond words.

The hours spent to fight Level I, Level II grievances to get reimbursement was probably 0.50 cents/hr. For me it was principal but it took its toll on all of us.

In addition to HHC payments, I had to file grievances for approximately 7+ MRI's/CT Scans due to not getting the prior authorization. Even though many were emergencies and "standard of care" tests for her tumor, I still had to spend countless days, weeks and months fighting this. There are still issues outstanding.

We are in our mid/late 30's and were dealt with something that many of us either:

• Do not think of
  
• Do not have the time to deal with
  
• Do not have the ability to comprehend in a serious crisis
  
• Do not have the energy to learn and fight the system

I only hope that we all continue to initiate change in the healthcare system as we know it. We used to run marathons, exercise daily, had successful careers and manageable debt. Now we deal with uncertainty, lack of time with each other, bills, "red tape" and fatigue. I have a beautiful wife and daughter but struggle daily with my responsibility to fight our flawed system that is more than a full time job.

It is sad and I feel for anyone who has dealt with a serious health crisis at any level, any age or any nationality. Please do not give up and exhaust all resources as you go through the process of protecting your families rights. The State Governor, Senator Offices and programs of NJ (and other States) have been tremendous in helping our situation. Please reach out to them and anyone else that can help. Thank you again. Prayers are with you — JW.

October 10, 2008

Jodi G., Montclair NJ

As a single working mother of 2 young children, I want to stay healthy. Despite my commitment to having health insurance coverage, as a freelance writer in the state of NJ, my options are limited to 2 companies whose plans are minimal and wholly inadequate. I cannot gain coverage through my professional associations and I'm not covered during my first year on this new plan for preexisting conditions, which at age 49, are the usual reasons to see my physician. And, even when I saw my physician — also a limited choice — with concerns about new symptoms, my problem was labeled as "pre-existing" by my insurer, which means fighting an uphill battle for reimbursement. It makes me wonder what I'm paying for...and yet, without it, I would be even more fearful of the "what if". I can't get the preventive care or treatment I would like nor can I see the physician of my choice. Yet, I must pay a premium every month, and can only hope. I'd sure like a more reliable plan that assures reasonable and adequate coverage and care provided by a physician of my choice.

September 26, 2008

Loren G.

My husband, who became disabled 10 years ago and was covered by his company med/dental until the end of '07, had his benefits terminated. He is now covered by Medicare (though much less adequately than before) leaving our children and me without coverage. I had to find AFFORDABLE coverage for the 3 of us and the only coverage that I could find that I could afford is really good only if there is no catastrophic illness or problem. It will only cover $250.00/day in a hospital, no brand name prescription coverage, no preventive care coverage, and this will cost over $500.00/month. My husband had to add on a Medicare prescription plan for his meds, and that will cost us hundreds of dollars each month for the copays alone. While we have coverage, I am fully aware at how inadequate our coverage is now and how unaffordable insurance is for a family. To go on COBRA would cost my $1,500/month for medical and dental benefits. I totally agree that we need universal health coverage, and take some of the power away from the private companies.

September 26, 2008