Authors: Rita Baron-Faust,Jill Buyon
The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life (55 page)
Navigating the New Medical Maze
I was incredibly lucky—it only took me a couple of months to get a diagnosis. I now have an excellent liver doctor. But his focus is on the liver, not on the fact that I have an autoimmune disease. He doesn’t discuss my diseases with me in that context. He discusses my medications and my liver function tests, and he makes sure that I’m doing OK. I get my blood work done at my GP’s office. And even then I don’t see the doctor. Once I found the American Autoimmune Related Diseases Association, I was able to learn a lot about autoimmunity and my own disease. And I was able to connect with other women who have these diseases, and it’s really wonderful. We exchange e-mails and we call each other. That support is really important. But I do wish there were doctors who specifically dealt with autoimmunity, so you could get a more complete picture of what’s going on. You learn things bit by bit, and so much is left for you to figure out on your own.
H
ANNAH
H
annah is lucky. The typical woman with an autoimmune disease may spend an average of four years, see five different doctors, and shell out over $50,000 before she gets a correct diagnosis. Some women have a tough time just getting their symptoms taken seriously.
1
A 2013 survey by the American Autoimmune Related Diseases Association (AARDA) found that 51 percent of patients were labeled “chronic complainers” by their doctors in
the early stages of their illness.
1
All too many women are told their symptoms are “all in their head” and are referred to a psychiatrist instead of a rheumatologist or endocrinologist, remarks Virginia Ladd, founder and president of AARDA.
Autoimmune diseases consume more than $100 billion annually in healthcare dollars and are the fourth leading cause of illness in American women, after heart disease, lung cancer, and breast cancer. Yet there are few centers that “triage” women to the proper care and help them form a care team, says Ladd. No specialty in
autoimmunology
exists, so it may not be easy to find the proper doctor to manage your care.
There needs to be an autoimmune specialty. We can have wacko symptoms that often make no sense. And each specialist is only looking at his one specialty. We need to have doctors who get the big picture. In my medical odyssey there were actually only two doctors who did not suspect what I had. The specialists, the ophthalmologist, the neurologist, the rheumatologist, and the hematologist, all suspected it was antiphospholipid syndrome. But my primary care physician and the first ER doctor I saw discounted it. I do think that part of it is that outside of big cities, in rural areas particularly, doctors may be insular and they are not comfortable with collaborative diagnoses in the way that doctors at major medical centers are. So I would tell women to get to a major medical center in a big city.
M
ARGARET
If you think you have an autoimmune disease—or need better care for an existing problem (or problems)—you need to find the right specialist to obtain the proper diagnosis, treatment, and follow-up. As a starting point, AARDA suggests identifying the type of medical specialist who deals with your major symptom, then looking for physicians who have board certification in that particular area. They should be certified by one of the specialty boards of the American Board of Medical Specialties (
http://
www.abms.org/
verify-
certification/
).
The following are some general guidelines for choosing a specialist:
Rheumatoid arthritis, lupus, Sjögren’s syndrome, and other connective tissue diseases are usually managed by a
rheumatologist
. This is a specialty that encompasses diseases of the joints, bones, and muscles, and related diseases in which the immune system may be in imbalance resulting in inflammation. A rheumatologist may have dual board certifications in internal medicine and rheumatology from the American Board of Internal Medicine, and will often belong to the American College of Rheumatology (ACR).
As your treatment progresses, other professionals can often help, including nurses, physical or occupational therapists, orthopedic surgeons, psychologists, and social workers. Physical therapists are certified by the American Board of Physical Medicine and Rehabilitation. If you should need joint replacement, you’ll need an orthopedic surgeon certified by the American Board of Orthopaedic Surgery; they can often be found through the American Association of Orthopaedic Surgeons (AAOS).
Endocrine disorders, including thyroid disease and type 1 diabetes, require the care of an
endocrinologist
. This specialist can also deal with issues of osteoporosis that arise from corticosteroid treatments.
Women with diabetes ideally should look for a physician who specializes in managing diabetes—an endocrinologist who’s a
diabetologist
, says Mount Sinai diabetologist Dr. Carol Levy. Your care team might include a certified diabetes educator (who may be a registered nurse or registered dietitian) to help you learn to manage glucose self-testing and insulin injections and structure a healthy eating plan that fits your likes, dislikes, and lifestyle. “Many internists will not have access to these people, so I recommend looking for a hospital that has a diabetes program or clinic,” Dr. Levy advises. “This is a lifelong condition that needs lifelong management, so it’s important to have an endocrinologist who can follow you. Your condition can change over time; you can develop complications or other autoimmune endocrine diseases, or new treatments may come out that will benefit you. So, ideally, the best person to manage your care is an endocrinologist.”
A diabetologist is an endocrinologist who specializes in diabetes and is board certified in Diabetes and Metabolism by the American Board of Internal Medicine; other board certifications include those with Special Qualifications in Endocrinology and/or Reproductive Endocrinology.
For neurological diseases, such as multiple sclerosis and myasthenia gravis, a
neurologist
is the best physician to diagnose and manage your condition. He or she should be board certified by the American Board of Neurological Surgery.
Gastrointestinal diseases, including Crohn’s disease, ulcerative colitis, and celiac disease, should be managed by a
gastroenterologist
. Autoimmune hepatitis and primary biliary cirrhosis are managed by gastroenterologists who specialize in liver disease called
hepatologists
. Your gastroenterologist should be a Diplomate of the American Board of Gastroenterology. For surgery, you’ll need a physician board certified in Colon and Rectal Surgery by the American Board of Colon and Rectal Surgery. The professional group is the American Society of Colon and Rectal Surgeons.
Specialists in blood disorders, called
hematologists
, can manage not only platelet disorders like immune thrombocytopenia, but also antiphospholipid syndrome. However, even if APS occurs without another autoimmune connective tissue disease, such as lupus, your rheumatologist can often manage APS. A hematologist is board certified in that specialty by the American Board of Internal Medicine and will usually be a member of the American Society of Hematology.
A
dermatologist
is best qualified to manage autoimmune skin disorders, including psoriasis, alopecia areata, and vitiligo. They can have general certification in Dermatology, with special qualifications in Dermatological Immunology/Diagnostic and Laboratory Immunology (for biopsies) from the American Academy of Dermatology.
A
reproductive endocrinologist
or
gynecologist
who specializes in infertility is ideally suited for diagnosing primary ovarian insufficiency and helping you get pregnant. The American Board of Obstetrics and Gynecology offers general certification in Obstetrics and Gynecology, with special Qualifications in Reproductive Endocrinology. A good OB/GYN will often be a fellow of the American College of Obstetricians and Gynecologists (ACOG). Infertility specialists are usually members of the American Society for Reproductive Medicine (ASRM).
Asthma and allergies can coexist with some autoimmune diseases. Specialists in this area are certified by the American Board of Allergy and Immunology. They typically belong to the American College of Asthma, Allergy and Immunology (ACAAI) or the American Association of Allergy, Asthma and Immunology (AAAAI).
In general, large teaching hospitals affiliated with medical schools are more likely to have an array of specialists to consult. You can also find an appropriate specialist by visiting the websites of the various professional organizations. Support groups for various disorders often keep lists of specialists and can be a valuable resource in finding the right doctor. (See
Appendix A
.)
Being followed by the right kind of specialist can make a difference to your care. For example, the American College of Rheumatology (ACR)
2
and the European League Against Rheumatism (EULAR) strongly recommend that women with RA be followed by a rheumatologist.
3
That’s because rheumatologists are more likely to know about and follow current treatment guidelines. For example, one study that examined the treatment of patients with RA belonging to a large health insurance plan in Pittsburgh found 67 percent of those being followed by a rheumatologist were prescribed disease-modifying antirheumatic drugs (DMARDs), compared to only 27 percent of those seen by a non-rheumatologist. And RA patients seen by non-rheumatologists were more likely to be given narcotics for their pain, rather than drugs that also target inflammation to dampen pain.
The specialist you pick can depend on those within the “network” of your health insurance (see
page 444
). Once you’ve made a list of potential providers, interview them. Ask each doctor how many patients he or she has treated with your particular problem. The more patients the doctor sees with your disease, the more skilled he or she is likely to be in treating it.
However, personal “fit” is important too. Even if you have found “the” expert in the field, the personal empathy may not be there. You’ll be revealing some of the most intimate details of your life to this person, so if you don’t feel comfortable talking to him or her, keep looking until you find the right fit. Too many of us choose a doctor who will have a major impact on our quality of life based on just one visit. Even though he or she may be an expert on your disease, you’re the expert on your own experiences with your illness.
The implementation and the impact of the 2010
Affordable Care Act (ACA)
vary from state to state and with insurance providers, and the ACA itself may be undergoing changes as other provisions take effect. Two resources to help you keep abreast of changes as they occur are
healthcare.gov
and the Henry J. Kaiser Foundation,
kff.org
. The Kaiser Foundation in particular
reports regularly on healthcare issues and costs that directly affect you. (See
Appendix A
.)
Under the ACA, several types of insurance plans are offered by health marketplaces in participating states, and they are tiered in five categories according to how much of your medical expenses they will cover. As this book goes to press, “Bronze” plans cover 60 percent of medical costs by in-network providers; midlevel “Silver” plans cover 70 percent, “
Gold
” plans pay 80 percent on average, and “
Platinum”
plans cover 90 percent of costs.
4
All of these plans can limit you to “network” physicians and some may cover “out-of-network” services. However, you may find some of the better doctors for your condition might be out of network and you’ll have to find this out and figure what your costs may be and how to pay for care. “
Catastrophic coverage”
plans pay less than 60 percent and are available only to people who are under 30 and/or have a hardship exemption.
5
If you enroll in a “silver plan” and you make $30,000 a year or less, you may be able to qualify for assistance to reduce your out-of-pocket costs for doctor’s visits, hospital care, and prescription drugs.
4
,
6
Types of plans may include:
- Health Maintenance Organizations (HMO).
A network of healthcare providers who agree to provide services to the group, often at a set fee per patient. Specialists are covered by HMOs, but you must pick a primary care provider on the HMO list (PCP) to make a referral. You may also have to live or work in the HMO’s area to obtain coverage. - Preferred Provider Organizations (PPO).
Specialists are included in a PPO network, and you can see the doctor of your choice, in most cases without a referral. You’ll be charged a small co-pay for each specialist visit. - Exclusive Provider Organization (EPO).
A managed care plan that allows you to see any healthcare provider within the EPO network, including specialists. Anyone outside the EPO will not be covered. - Point of Service (POS).
In a POS plan you pick a PCP for routine care within the network and he or she will refer you to a specialist. If you’re willing to pay more, you can see an out-of-network specialist.
5 - High Deductible Health Plan (HDHP).
You have to pay out a certain amount before coverage kicks in. Deductibles are typically around $1,250 for an individual and $2,500 for a family. These may be linked to a Health Savings Account (HSA).
With the advent of the ACA, some patients report changes in their access to care—and the cost of that care.
AARDA and the National Coalition of Autoimmune Groups (NCAPG) conducted a survey in 2013 among 357 people with one or more autoimmune diseases, and preliminary results found many were directly affected by the ACA. While 66 percent were able to keep seeing their specialist, 45 percent were concerned about their continued access to care.
7
About a third of patients report that the services they receive were decreased or remained the same. Insurance premiums have increased for 42 percent. Some people have had to switch insurance plans.
5
In general, however, costs have risen only moderately since the ACA took effect.
8
As this book went to press, you may qualify for tax subsidies to help pay premiums for plans purchased through federal insurance exchanges if you make between $12,000 and $47,000 a year (as an individual).
5
The upshot: we will all have to stay on top of changes in the law (check
www.healthcare.gov
for updates) and in the marketplace (your co-pays and other out-of-pocket costs)—and become active advocates for our own medical care.
When I was diagnosed with autoimmune hepatitis and my family started talking about it, we realized there was a family history of autoimmune disease. My mother has Hashimoto’s thyroiditis, and my grandfather was also hypothyroid. My grandmother had type 1 diabetes. So there was definitely a history, but we’d never talked about it as autoimmunity. It turns out my dad’s brother also had hypothyroidism. So we have it on both sides of the family. But no one had liver disease, at least that I know of.
H
ANNAH
I never even asked questions until recent years, and found out we had an extensive family history of thyroid disease that stretched into my second and third cousins. I’ve persuaded my brother to be tested, since his daughter has a thyroid problem. And it wasn’t just thyroid—my father had Crohn’s disease and Hashimoto’s, my second cousin had celiac disease, and another cousin has lupus. And honestly, I might never have known.
L
YNNE