COMPASSIONATE ALLOWANCES IN 2023

SSA’S NEW COMPASSIONATE ALLOWANCES FOR 2023

In 2023 there were several new Compassionate Allowances added to SSA’s list. The Compassionate Allowances initiative allows Social Security to quickly identify severe medical conditions that meet the criteria for SSD benefits.

Because the diseases on the list are so severe, the SSA wants to pay benefits as soon as possible. For example, fatal conditions like ALS are on the SSA’s list. Every year, new compassionate allowances are added to the list.

If you know you have a medical condition that qualifies under compassionate allowances, then you can state that on your application for benefits. You can learn more about past additions to the list.

According to the SSA, more than 700,000 people have their claims approved through the Compassionate Allowances program. Additionally, you can submit the name of a severe medical condition for consideration under SSA’s list. You should submit your disease to the SSA if you have a rare and severe medical condition.

TWELVE NEW COMPASSIONATE ALLOWANCES IN 2023

1p36 DELETION SYNDROME

1p36 Deletion Syndrome is a new compassionate allowance. It is a rare chromosome disorder that causes severe intellectual disability. Most individuals do not speak or speak only a few words. They may have temper tantrums, bite themselves, or exhibit other behavior problems. More than half of individuals with this disorder have structural abnormalities of the brain and experience seizures.

PHYSICAL FINDINGS OF 1p36

Individuals with 1p36 deletion may have:

Another new compassionate allowance is Anaplastic Ependymoma. This disease occurs when a malignant tumor forms in the central nervous system (including the brain and spinal cord). An ependymoma is anaplastic if the cells grow very quickly and are significantly unusual in shape.

The symptoms of an anaplastic ependymoma depend on the age of the person and the size and location of the tumor. Anaplastic ependymoma is very aggressive and is classed by the World Health Organization (WHO) as a Grade III central nervous system cancer.

Ependymomas can occur at any age. When ependymomas occur in children, they are frequently located in the brain (intracranial). In adults, ependymomas are often found in the spinal cord.

The exact cause of anaplastic ependymoma is not known, but it is thought that certain changes (acquired pathogenic variants, also known as somatic genetic changes) in specific genes in some cells of the body allow the cells to begin growing quickly.

For Grade III anaplastic ependymomas the prognosis is poor. The relative 5 year survival rate for ependymoma is about 60%. Factors that affect results include the tumor grade and type, traits of the cancer, the person’s age and health, and how they respond to treatment.

CALCIPHYLAXIS

Calciphylaxis is a rare metabolic disease in which calcium builds up in the walls of veins and arteries, blocking blood flow and resulting in damage to multiple organ systems. The denial of blood to tissues causes painful, infected sores on the skin that cannot heal without external intervention.

Although the exact cause is unknown, calciphylaxis is usually observed in people with end stage renal disease who are on dialysis or have undergone a kidney transplant. When seen in people with normal kidney function, other associated medical conditions tend to include inflammatory bowel disease, autoimmune disorders, or cancer.

A diagnosis of calciphylaxis can be confirmed through skin biopsy, function tests of the kidneys and liver, and tests for concentration of calcium and other minerals in the blood. In some advanced cases involving ESRD, diagnosis is possible through visual inspection of wounds.

CHOLANGIOCARCINOMA

Cholangiocarcinoma is a cancer that develops in the cells within the thin tubes (bile ducts) that bring the fluid that helps you digest food (bile) from the liver and gallbladder to the small intestine.

Cancer that occurs within the bile ducts is biliary tract cancer and it can occur in the bile ducts both inside and outside the liver.

There are three types of cholangiocarcinoma:

LEBER CONGENITAL AMAUROSIS

Leber Congenital Amaurosis is a disease of infancy in which the rods and cones in the retinas, which detect color and light, fail to properly develop. This results in severe vision impairment. It is the most common cause of blindness in children.

LCA is a genetic disorder that follows an autosomal-recessive inheritance pattern. There are currently over 20 variants of LCA. In about 30 percent of cases, the affected gene is unknown. Certain tests measure the function of the rods and cones. Also, a genetic workup can help identify the gene. Generally, people with LCA require assistive devices and care for the duration of their lives. Some children with LCA experience slight improvement in visual acuity as they mature, but this is uncommon.

METASTATIC ENDOMETRIAL ADENOCARCINOMA

Metastatic Endometrial Adenocarcinoma is a disease in which malignant cancer cells form in the tissue of the endometrial lining of the uterus and spread to distant parts of the body and other organs including the cervix, vagina, ovaries, lymph nodes, urinary bladder, rectum, bones, and lungs.

There are four stages of endometrial adenocarcinoma.

• Stage I: The cancer is only in the uterus or womb and it has not spread to other parts of the body.
• Stage II: The tumor has spread from the uterus to the cervical stroma but not to other parts of the body.
• Stage III: The cancer has spread beyond the uterus, but it is still only in the pelvic area.
• Stage IV: The cancer has metastasized to the rectum, bladder, and/or distant organs.

After treatment, endometrial cancer can come back. The cancer may come back in the uterus , the pelvis , in lymph nodes in the abdomen , or in other parts of the body.

PARANEOPLASTIC CEREBELLAR DEGENERATION

Paraneoplastic Cerebellar Degeneration is a syndrome caused by “killer T-cells” that attack normal cells in the cerebellum. The syndrome occurs as a result of abnormal responses to undetected malignant tumors.

PCD is a rare, non-metastatic complication that occurs in less than 1% of cancer patients. Those who get PCD are also individuals with ovarian cancer, uterine cancer, breast cancer, small-cell lung cancer, and Hodgkin lymphoma.

The symptoms of PCD can progress rapidly and they precede the diagnosis of the underlying malignancy. Prompt treatment of this disease is crucial to the prevention of significant symptoms. Treatment of PCD varies depending on the source and severity of the underlying tumor. Common treatment for the condition may include tumor removal, high dose gammaglobulin therapy, or immunotherapy.

PINEOBLASTOMA – CHILDHOOD

Pineoblastoma – Childhood is an aggressive cancerous tumor that grows in a part of the brain known as the pineal gland. It occurs mainly in children. These tumors are primary central nervous system tumors that start in the brain and can spread to the spinal cord and beyond.

Pineoblastoma’s fast growth usually causes cerebrospinal fluid to build up in and around the brain , increasing intracranial pressure. The cause of the disease is unknown. However, specific inherited variants in two genes, increase the risk of developing the disease.

While pineal region tumors can occur at any age, they are more common in children. All tumors, except papillary tumors of the pineal region, occur slightly more often in females than males.

The five year survival rate for children is 50-60%. Many factors can affect prognosis, including tumor grade and type, traits of the cancer, the person’s age and health when diagnosed, and response to treatment.

Patients who receive radiation therapy are at risk for long-term endocrine system changes that may lead to problems such as delayed growth, fatigue, and fertility problems. Problems with hydrocephalus can persist in patients who have been successfully treated.

PRIMARY OMENTAL CANCER

Primary Omental Cancer is an extremely rare cancer that begins in the omentum, a fold of the thin tissue known as the peritoneum that surrounds the stomach and other organs in the abdomen. The function of the omentum is not fully understood. But, it extends to every organ in the abdomen and drapes over areas of inflammation. It also acts as a bandage to promote healing if there is an infection or other health problem.

Tumors that originate in the omentum are extremely rare. For example, there are less than 100 cases documented cases. The cause of primary omental cancer is unknown. Adults older than 50 are more likely to get primary omental cancer.

SARCOMATOID CARCINOMA OF THE LUNG – STAGES II-IV

Sarcomatoid Carcinoma of the Lung – Stages II – IV  is also a compassionate allowance. Because it is an aggressive cancer that is a mix of carcinoma and sarcoma cancer types. These carcinomas can appear throughout the body but are most commonly occur in the lung. The tumor is usually locally advanced at the time of diagnosis.

Sarcomatoid carcinoma that starts in the lung often spreads quickly. Tumors may spread to the lymph nodes, followed by the adrenal glands, brain, bone, liver, kidney, the lining of the abdomen and abdominal organs, pancreas, skin, and heart.

Sarcomatoid carcinoma occurs most often in people who are male at birth and people with a history of tobacco use. The average age of diagnosis is 65. Stage I fully resected tumors have a long term cure rate of 50% or better. Stage II-IV tumors have a much poorer prognosis. The average survival of those with stage II-IV tumors is only 2-3 years.

There is no cure for advanced sarcomatoid carcinoma of the lung. The most common approach to treatment is surgery to remove the tumor followed by chemotherapy.

TRISOMY 9

Trisomy 9 is also a compassionate allowance. It is a congenital impairment in which the body’s cells contain an extra copy of all or part of Chromosome 9. This results in serious effects on growth and function of a broad array of body systems.

Signs and symptoms vary from person to person and depend on the percentage of affected cells. Typical signs and symptoms include severe intellectual deficit, developmental delay, growth issues, congenital heart defects, and craniofacial abnormalities.

There are three types of Trisomy 9:

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In the past 30 years, we have won over 20,000 SSD cases for our clients. Additionally, we have won many cases using the compassionate allowances list.