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Home >> Policy Initiatives

Policy Initiatives



In addition to our general advocacy efforts to increase government funding for autonomic disorders in the US and abroad, we have identified two policy matters to focus on in the next year.

Updating SSDI Regulations to Include POTS
In the United States, when an individual becomes so disabled that they cannot work, they can apply for Social Security Disability (SSDI). Some health conditions are explicitly recognized by the Social Security Administration guidelines. This helps patients with those conditions get a fairer, faster and more uniform review of their application.

In October 2011, the Social Security Administration added Multiple System Atrophy to its Compassionate Allowance program and we are grateful for that. This will allow patients diagnosed with Multiple System Atrophy, who also meet Social Security's eligibility criteria, to receive a decision on their SSDI application within a few days, rather than months or years.

We would like to see the Social Security Administration adopt condition specific guidelines for POTS as well, although it is unlikely that POTS would be granted Compassionate Allowance status. Compassionate Allowance status is only granted to rapidly progressive or fatal diseases, like MSA. POTS is not fatal, but estimates are that about 25% of POTS patients are disabled and cannot work or attend school. In addition to the Compassionate Allowance status, which only applies to 165 diseases, Social Security's guidelines contain descriptions of hundreds of medical conditions or "impairments." We would like to see POTS included in the impairment guidelines.

We have learned from speaking with many POTS patients that the Social Security Administration's review of claims for POTS patients is very inconsistent. Patients who are very sick and mostly bedridden for years have had their claims denied, while other patients who are doing fairly well have had their claims approved. There needs to be more consistency within the review system and a fairness that ensures that those who really need SSDI the most due to their severe health situation are approved.

We will be working with medical experts, government officials and legal experts to craft accurate, fair and clear guidelines for the Social Security Administration's review of disability claims from POTS patients. Changing federal guidelines can be a long process, but Dysautonomia International is here for the long haul.


ICD-11 Codes
We would like to see diagnostic codes specific to each autonomic disorder included in the ICD-11.

The International Classification of Diseases ("ICD") is according to its publisher, the United Nations-sponsored World Health Organization "the standard diagnostic tool for epidemiology, health management and clinical purposes." ICD-11 is the eleventh version of the ICD. It is currently being edited by physicians working with the UN-World Health Organization, and is expected to be published in 2015.

The ICD is the foundation for the identification of health trends and statistics globally. It is the international standard for defining and reporting diseases and health conditions. It allows the world to compare and share health information using a common language. It is the diagnostic classification standard for all clinical and research purposes. The ICD defines the universe of diseases, disorders, injuries and other related health conditions. These entities are listed in a comprehensive way so that, in theory, everything is covered.

The current ICDs (version 9 or 10, depending on which county you live in) do not contain ICD codes specific to certain autonomic disorders. Dysautonomia International is working with our expert Medical Advisory Board, and will seek the opinions of other experts in the field, to identify which autonomic disorders may be appropriate to include as a specific diagnostic code in the ICD-11. We will then work with these experts to build a consensus amongst the WHO editing committees that will be putting together the final version of the ICD-11. The revision of the ICD is a massive effort and requires cooperation from hundreds, if not thousands of physicians and researchers from around the world.
 

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