BILL NUMBER: S7520               Revised 2/5/18

SPONSOR: HANNON
 
TITLE OF BILL:  An act to amend the public health law, in relation to
including certain chronic and often misunderstood illnesses, primarily
affecting women for which there are no diagnostic tests or cures within
the health care and wellness education and outreach program

 
PURPOSE:

Includes within the existing Health Care and Wellness Education and
Outreach Program certain chronic, misunderstood illnesses, which prima-
rily affect women including but not limited to Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia,

 
SUMMARY OF PROVISIONS:

Section 1 of the bill amends section 207 of the Public Health Law by
adding a new subparagraph (0) to paragraph 1 which adds Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia
(FM), and other chronic and often misunderstood illnesses which primari-
              

ly affect women for which there are no diagnostic tests or cures to the
list of health care matters under the Health Care and Wellness Education
and Outreach Program. Further provides that the program shall include an
advisory council that includes representatives of people with these
illnesses, their families and health care providers who specialize in
treating such illnesses among others.

Section 2 of the bill provides an effective date.

 
JUSTIFICATION:

Many New Yorkers, especially women, suffer from debilitating illnesses
for which there are no diagnostic tests such as Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia
(FM). This legislation adds these two illnesses, as well as other
illnesses, which primarily affect women, have no diagnostic tests avail-
able, and are often underdiagnosed and misunderstood by the medical
community to the list of identified health care matters under the
state's Health Care and Wellness Education and Outreach Program under
the Department of Health. The inclusion of these illnesses within the
program raises awareness and expressly authorizes education and outreach
regarding these illnesses to both health care providers and the public.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-
system disease associated with neurological, immunological and energy
metabolism impairment characterized by long standing and debilitating
fatigue with a delayed exacerbation of symptoms and loss of stamina
following even minimal mental or physical function.  Symptoms may also
include cognitive dysfunction, sleep abnormalities, autonomic manifesta-
tions and pain. It is estimated ME/CFS affects up to one million Ameri-
cans, but the actual numbers could be much higher. According to the
Institute of Medicine, an estimated 84-91% of individuals have not yet
been diagnosed. Women are far more likely to have this illness then men
with a ratio of 4 to 1. At least 25% of ME/CFS patients are confined to
home or bed. The cause of this illness remains unknown and there are no
diagnostic tools, nor existing cure. There are however therapies avail-
able to manage symptoms.

Education and outreach to the public and health care providers about
ME/CFS is very important, as is the need for more research to discover
the causes, understand the mechanisms of the disease and develop effec-
tive diagnostic markers and treatments. Unfortunately, the term "Chronic
Fatigue Syndrome" has a negative connotation and can trivialize the
seriousness of the condition and promote misunderstanding of the
illness. This makes the need for education and outreach even more impor-
tant.

Fibromyalgia (FM) is a complex chronic pain disorder characterized by
widespread musculoskeletal pain accompanied by fatigue, sleep disorders,
and cognitive difficulties. Symptoms may also include tension headaches,
temporomandibular joint (TMJ) disorders, irritable bowel syndrome,
anxiety and depression. FM affects approximately 10 million Americans
and women are far more likely to have FM then men with a ratio of 8 to
2. Symptoms can range from slight to severe, but the disease is life-al-
tering for those who suffer from it. There are no diagnostic tests, nor
is there a cure. Patients work with health care providers to develop
strategies to manage and relieve the symptoms.

Like ME/CFS, those suffering from FM often face cultural attitudes and
stigmatization, which can lead to isolation. It is imperative that more
education and outreach be made available to address stigmatization and
connect people with good health care. By managing symptoms, patients can
have a greater quality of life and for FM patients, lead more normal and
productive lives. Additionally, more research on these illnesses is
necessary to create diagnostic tools and to find cures.

This legislation will help ensure New York is providing more education
and outreach regarding these and other illness like them so the public,
patients and health care providers are better informed.  Additionally it
provides for an Advisory Council made up of patients, families of
patients and health care experts in these illnesses to assist the
Department.

 
LEGISLATIVE HISTORY:  New Bill

 
FISCAL IMPLICATIONS:

None

 
EFFECTIVE DATE:
Immediately