Social Security Disability ‘Compassionate Allowance’ – Only For Those Who are Impoverished?

Today I called the Social Security Office in Nevada to find out about the compassionate allowance program for our twins. Last month, the Social Security Administration added 38 more conditions to the already 50 rare diseases and cancers designated for compassionate allowance, which provides expedited review of disability applications from people with severely disabling conditions. Niemann Pick Type C disease was added to the list and after reading the press release I assumed our children would qualify.

After navigating  through the Social Security automated voice activated phone system for 30 minutes and losing the connection, I finally managed to get through to a live person. In the State of Nevada, you can select a Social Security appointment by telephone or in person. I chose the telephone appointments. Apparently, we can’t set up back to back appointments so I made them for March 18th and 19th at 10:32am.  All appointments in our State are done at 2 minutes after the hour. Only the government could come up with such a thing.

I was told that each appointment would be 1 ½ hours long to fill out the information. I tried to explain that our applications will be identical except for one minor change – one application will say Addison and the other Cassidy.  Still two appointments (unless I decide cancel — I’ll get into this below).

Social Security had some quick questions for me – how much is our annual income (I could not recall the number on the phone) and do Addi and Cassi have siblings (No).  They also wanted to know if I am “working.”  I am not officially working a job outside the home but I do spend all my time “working” to find treatments for our girls and we spend a significant portion of our money/income on funding research and experimental treatments.  The call was all very vague but I made the appointments to get real facts on the program in order to share with others in my situation.

A friend of mine who has a child with a different lethal rare disease told me this morning that with her husband’s unemployment and her part-time job, they make the ‘big bucks’ and don’t qualify for the program. I was shocked. I guess you have to be completely impoverished to get any assistance — little to no income from what I understand.  I now want to find out the truth as to who gets what so that people are not wasting their time pursuing something they obviously don’t qualify for. If a family with three kids (one who is dying) and who are on unemployment and working part time jobs don’t qualify, who does?

When a major announcement is made in the media touting how the government is helping kids who are dying, they might want to put in a caveat that says, “you can only qualify if your parents make X amount per year.”  I am looking at spending 3 hours of my valuable time to find out we make too much money.  I am certain we are making too much money but the way they promoted the program made it appear that all qualify.  How many people is this program truly helping?  And why would they want to accept and process two applications from me?  What a total waste of government time and resources!

For many people applying for benefits, the Social Security Disability process is a slow one. Being awarded benefits can take many months, often years. I was told our case would be reviewed within 20 days of filing the applications. A typical time frame for review is 120 days. I was told the “child rate” in the State of Nevada is $674 (this is the maximum amount per child).  Who could live off of $674 a month and why not 675?

The National Organization for Rare Disorders (NORD) helped get the list expanded. I am going to contact NORD to see if they know what the income limitations are for this program and why the income number was not put into the press release.

If you have a rare and terminal disease and want to find out about the compassionate allowance program, click here to go to the SSA website.  They won’t tell you if you qualify. I suspect most people don’t.  I found a helpful State-by-State list of Social Security Offices on a Huntington’s disease website if you wish to pursue it.

In addition to Niemann Pick Type C disease, some of the newly added conditions for compassionate allowance include Ataxia Telangiectasia, Hurler Syndrome Type IH, Idiopathic Pulmonary Fibrosis, Neonatal Adrenoleukodystrophy, Sanfilippo Syndrome and Wolman disease.

Here is a quick list of the new Compassionate Allowance conditions:

• Alstrom Syndrome
• Amegakaryocytic Thrombocytopenia
• Ataxia Spinocerebellar
• Ataxia Telangiectasia
• Batten Disease
• Bilateral Retinoblastoma
• Cri du Chat Syndrome
• Degos Disease
• Early-Onset Alzheimer’s Disease
• Edwards Syndrome
• Fibrodysplasia Ossificans Progressiva
• Fukuyama Congenital Muscular Dystrophy
• Glutaric Acidemia Type II
• Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
• Hurler Syndrome, Type IH
• Hunter Syndrome, Type II
• Idiopathic Pulmonary Fibrosis
• Junctional Epidermolysis Bullosa, Lethal Type
• Late Infantile Neuronal Ceroid Lipofuscinoses
• Leigh’s Disease
• Maple Syrup Urine Disease
• Merosin Deficient Congenital Muscular Dystrophy
• Mixed Dementia
• Mucosal Malignant Melanoma
• Neonatal Adrenoleukodystrophy
• Neuronal Ceroid Lipofuscinoses, Infantile Type
• Niemann-Pick Type C
• Patau Syndrome
• Primary Progressive Aphasia
• Progressive Multifocal Leukoencephalopathy
• Sanfilippo Syndrome
• Subacute Sclerosis Panencephalitis
• Tay Sachs Disease
• Thanatophoric Dysplasia, Type 1
• Ullrich Congenital Muscular Dystrophy
• Walker Warburg Syndrome
• Wolman Disease
• Zellweger Syndrome

Rare Disease Idea Leads ‘Ideas For Change In America’ Competition by Change.org

Ideas for Change in America is a competition that empowers citizens to identify and build momentum around a diverse range of ideas for addressing the challenges our country faces.

From January – February 2010, more than 2,500 ideas were submitted and voted on by 100,000 people across the country. The top three rated ideas from each issue category qualified for the final round.

Right now, 25 Million+, It is time to care about rare disease is rated as the #1 overall topic! Let’s help it stay at the top.  Vote here!

The 10 most popular ideas will be presented to relevant members of the Obama Administration, and Change.org will subsequently mobilize its full community to support a series of grassroots campaigns to help turn each idea into reality.

Please take a few minutes and cast your vote on behalf of the 30 million Americans affected by rare disease — that’s 1 in 10 people in the US living with a chronic or life threatening rare disease!   It’s time to care about rare!

I am Green Beans and Ensure!

I am laughter until my belly hurts. I am strong, plus I have muscles. I am Illinois and Iowa. I am a brother with many parents. I am a sports fan. I am dogs and cats, horses and cows fan. I am green beans and Ensure. I am Happy Joe’s on a Friday night. I am one/fifth of a tribe. I am a guiding light. I am a force to be reckoned with. I am finding my place. I am independent. I am a handholder. I am OT. I am PT. I am one hospital stay away from owning my own wing. I am evolving, becoming. I am Niemann-Pick Type C.

Tylor Richardson is a teenager suffering from Niemann-Pick Type C (NPC) disease, a fatal and relentlessly progressive neurological condition that results from the inability to process cholesterol at the cellular level.

There are approximately 500 children in the world living with this rare disease that causes dementia yet research into the NPC cholesterol gene could lead to discoveries that could help millions.

Obama Cracks Jokes About Cholesterol Level And Personal Health – Is He Out of Touch?

I almost had a heart attack today (no pun intended) when I read that President Obama was joking about his cholesterol.  “I don’t want any lectures about my cholesterol,” he said, according to the pool report.

If President Obama needs inspiration to cut his cholesterol and push away that fried chicken the next time he sits down for a meal, he might want to read about my six year old identical twins and their cholesterol problem. Cholesterol is killing them. And it’s no joke!

If President Obama was to meet my twins he might ask them why he should pay attention to his cholesterol and how cholesterol impacts their health.  Too bad cholesterol has destroyed their ability to talk and their memories too. My children suffer from one of the worst genetic cholesterol diseases on the planet – Niemann Pick Type C. Millions of other people are suffering from cholesterol related illnesses that kill – just ask former President Clinton or the people on statin drugs.

I think President Obama should call the American Heart Association and apologize.  We need people in the highest levels of our government taking their personal health seriously and using their time in the public eye to educate.  How can you expect a nation to change their eating habits when you’re stuffing fried chicken in your mouth and cracking jokes about your health?  The PR people should be fired as Obama should know exactly what he should say to the public about his cholesterol and meals for him should be ordered in advance.

One of the last jokes Obama cracked was on Jay Leno about the Special Olympics and I wrote a blog about this too. I’d like the President to understand why my kids are “special needs” — they are literally losing their minds as a result of this genetic cholesterol illness.  In fact, 22 million children in the US are estimated to suffer from chronic and life threatening rare diseases like Addi and Cassi which are causing a major crisis in our education and health care systems.

I spend my days trying to educate people about cholesterol. Cholesterol problems are mainly genetic in origin. Many roads are leading to the Niemann Pick Type C gene on Chromosome 18 as one of the major drivers of cholesterol in the human body.  The NPC gene regulates human cholesterol at the cellular level and we are all born with this gene.  This is why Nobel  Prize cholesterol scientists Drs. Brown and Goldstein are studying the gene and publishing papers about Niemann Pick.  Addi and Cassi were simply born with genetic defects on this cholesterol processing gene have a fatal and relentlessly progressive neurological condition as a result.

The Niemann Pick Type C gene is also thought to be a culprit in obesity. Last year, I posted a blog about the genetic link to obesity and the Niemann Pick Type C gene from a research group at Inserm in France.  Given the First Lady’s interest in helping solving obesity in America, she might want to read it.

FDA and EMA Forge Rare Disease Collaboration; Announcement Coincides with World Rare Disease Day 2010

In recognition of World Rare Disease Day 2010, the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) announced that they will collaborate together and now accept a single annual report from sponsors with an orphan drug designation for rare medical conditions.

The joint announcement was made by Dr. Timothy Cote, director of FDA’s Office of Orphan Products Development and Dr. Jordi Llinares, head of Orphan Medicines at the EMA and marks an important step forward towards increasing data sharing between the two agencies.

An ‘annual report’ for an orphan drug is information that is typically provided about the development of orphan medical products, including a review and status of ongoing clinical studies, a description of the investigation plan and anticipated or current problems in the process that may impact an orphan product designation.

The submission is voluntary and applies only to sponsors who have obtained an orphan designation status for their product from both the FDA and EMA. Each regulatory body will conduct their own review and assessment of the annual report to assure the information meets all the legal and scientific requirements of each agency.

By allowing a single annual report submission to both regulatory agencies, the paperwork process is streamlined and precious time is saved as organizations can focus their energies on moving drug development forward instead of duplicating paperwork efforts. The FDA and EMA plan to exchange the annual reports electronically through a secure portal starting Feb. 28, 2010.

Hopefully, we will see more of this type of collaboration in the future by both agencies.  I am looking into filing my Orphan Drug Application for Cyclodextrin with the EMA and I am happy to see the two agencies working more closely together.

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