(Interview 5/2014. Oil on linen, 40 ins.x 30 ins.)
When I reached out to Ilana for an update, she sent me this lovely note.
"Hi Theresa!! It’s so wonderful to hear from you I have your portrait hanging in my office and it’s behind me on my Zoom calls all day so everyone can see it in my meetings! Currently I’m on COBRA as my husband transitions jobs and it’s costing us about $2,000 a month in the interim. But with both of us being on biologics we couldn’t have a gap at all. I’m doing okay health wise — my IVIG which I had stopped for many years and finally restarted two months ago is helping a lot — I actually just built up enough antibodies to get my first COVID shot I currently work for WEGO Health as a Patient Leader Network Manager still working in patient advocacy just more on the agency/PR side of it.
In 2021 Ilana shared her plight in a social media post:
"I’m a patient advocate with 31-years of experience living with a rare disease. So I knew getting my #primaryimmunedeficiency medication covered through a new insurance was going to be hard. When we switched from Cigna to Blue Cross Blue Shield, we paid for #Cobra to ensure my treatment would be covered while we waited for prior authorization. For 6 weeks we waited. My immunologist submitted all the right paperwork. My infusion pharmacy made bi-weekly calls on my behalf. As expected, coverage was denied on the first round. So we resubmitted with more proof of need. BCBS “lost” the paperwork and closed the case. Meaning when they re-opened it, we’d have to start all over. My infusion pharmacy went to war, arguing fault and eventually BCBS offered a peer-to-peer review. While we waited for them to schedule it, I ran out of medication.
"And I suffered because of it.
"Today, after weeks of worry and waiting, they finally approved my coverage and I’ll be getting a new batch of meds soon. In the interim, I reached out to my contacts at my manufacturers company and they also supplied me with a compassion dose through IG Cares.
My team and I did everything the right way, with so much forethought and precaution.
It’s sad that patients have to be experts in this way. It’s sad that American insurance companies are so greedy that they claim to know better than our doctors and ignore lab work. Do better."
Artist’s Note (2014)
“I don’t know how people survive without insurance,” this subject told me. I hear these words often from people who would no doubt be dead without access to the medical care their health insurance gives them.
As a child Ilana suffered undiagnosed chronic illness that followed her into adulthood. The wallop from her stubborn illness would defeat most. I am humbled by this subject’s resilience. She’s doing it -- trying to stay alive AND create a meaningful life. Her name is Ilana Jacqueline.
The US healthcare story can be summed up by comparing Ilana's story with another Art As Social Inquiry subject. Belinda Bach's childhood was marked by frequent doctors' appointments, missed school and serious illness that also followed her into adulthood. Ilana's care has been consistent; Belinda's, disjointed and irregular. Belinda was uninsured most of her short adult life. She died at 28.
One lived. One died.
The takeaway is simple. Access to health insurance is a basic human right if we value human life. Some can survive very serious illness with good, regular, affordable care. Many die without access to good care -- even the young.
Managing Editor / Columnist for Non-Profit Organization, Free-Lance Writer, Insured, User of Concierge Medicine, Age 24
Ilana works for a non-profit, a patient advocacy organization for people with rare diseases. Their mission, “To eliminate the challenges of rare disease by building awareness, and providing critical connections and resources to positively impact affected patients and families.”
Ilana is able to stay on her stepfather’s insurance plan through his job until she is 26 due to a provision in the Affordable Care Act, the new healthcare law.
At 22, Ilana was diagnosed with postural orthostatic tachycardia syndrome, POTS. POTS is described this way. “An excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position.”
For Ilana POTS feels like bottomless pain, dehydration, dizziness, weakness, racing heart, shortness of breath, major joint pain, migraines, narcolepsy, low blood volume, low blood pressure. POTS is sometimes accompanied by gastroparesis. Ilana’s stomach won’t contract. Intestines become paralyzed and food does not move through her system. She must stick to a limited, bland diet. No dairy, no cheese, no lactose, no eggs, no spicy food.
At 19 Ilana was diagnosed with primary immune deficiency. Primary means Ilana was born with the disease. Her body does not make antibodies to protect her from harmful bacteria.
A Typical Day
Fatigue defines every day. Ilana sleeps 2-4 hours during the day and 9 hours at night. Sleep is not restorative. She feels clammy. Her heart beats hard. Work- sleep- work- sleep…she can only focus 2-3 hours at a time. Driving is not possible when Ilana is on pain medication. When she is too weak from a liquid-only diet. Or when she has not had enough sleep—all of which are common occurrences.
Ilana takes 14 pills a day. There are times when her muscles are so weak she cannot feed herself. Sometimes she uses a wheelchair.
Immune deficiency gave her dental problems. She has no defenses against the bacteria in her mouth. Ilana paid $2,000 to get 12 cavities fixed. The anesthesia required drove up the cost. Illana has strong gag reflex.
Ilana must get intravenous saline solution 3 times a week during the hot Florida summer, and 1-2 times per week during the rest of the year. After Ilana’s primary immune deficiency diagnosis in 2009, she needed a handful of very expensive intravenous immunoglobulin treatments (IVIG).
At 22 she was part of a trial and received more IVIG infusions. “It’s something we’re considering putting me back on again because of low immunoglobulin levels, high rate of infection, and lack of response to antibiotics.”
In a typical week Ilana will see a specialist such as an ophthalmologist, immunologist, or gastro-immunologist in addition to her primary care doctor.
What Is Concierge Medicine?
And how is it helping Ilana?
In Concierge medicine patients opt to keep their doctor on what could be likened to a retairner. “Concierge doctors offer their services to patients directly in exchange for an upfront fee, usually paid monthly."
Ilana's doctor takes insurance to cover some services. She still pays co-pays and out-of-pocket costs as determined by her insurance policy. However, Ilana pays an additional $200/month to the doctor for 24/7 access.
“Not another doctor. Always MY doctor. I have his cell phone number. I can call him at 4 in the morning if I have to. I’m never in a situation where the doctor is unfamiliar with my conditions.” He coordinates care with specialists, researches, and consults with colleagues about possible treatments."
When POTS first emerged, Ilana had been running to the emergency room. She was always treated with intravenous saline but not before getting the same tests every single time to rule out other causes – CAT scan (perhaps an injury?), asthma test, EKG (heart problem?), pulmonary function test (lung problem?), and a battery of blood tests as well.
“After the third week of going to the ER every day for saline, I knew I needed the IV saline but not in a hospital setting. “
Ilana found her concierge doctor through a friend who also has a chronic disease. The doctor was willing to learn as much as possible about POTS. “He called researchers, and started working with specialists I was already seeing.” Her doctor knows her well. Before becoming his patient, Ilana would be prescribed medicine that she maybe took once. “I was out a lot of money. Not so much hit or miss with the concierge doctor.”
Occasionally Ilana needs intravenous immunoglobulin infusions to treat immune deficiency. “Plasma from approximately 1,000 to 10,000 persons is present in each unit or ‘lot’ of IVIG.” Insurance companies resist approving the expensive treatment especially on the first try. Ilana’s doctor created a timeline of Ilana’s every infection, and got approval after one request.
What About the Insurance?
Ilana is 24 and able to stay on her stepfather’s insurance plan until she is 26 years old. “Thank God!” Ilana knows that without the healthcare law, she would not have been able to stay on her stepfather’s policy.
She also knows that no insurance company would have sold her an individual policy because she has preexisting conditions. The Affordable Care Act ended the practice of discriminating against those with preexisting conditions.
Ilana pays all the out-of-pocket costs she incurs when getting medical care.
Started the portrait. It was perfect. Overworked it. A Basement Painting
Ilana spent her entire childhood undiagnosed.
Primary immune deficiency looks like so many things – pneumonia, bronchitis, asthma. She suffered with stomach and eye problems, fatigue, a collapsed lung, calcification of the ankles.
“I had repeat infections that wouldn’t clear up after weeks of antibiotics. I’m now at a point where I MUST have IV antibiotics for even a small infection because a lack of a diagnosis when I was little led us to overuse antibiotics which no longer work well for me.”
In 1990 when Ilana was born, immune deficiency was not part of the newborn screening panel. “Today, things that are supposed to work don’t because I was not diagnosed at birth to get early intervention,” she says. Ilana was hospitalized every single winter from ages 7-18.
Finally at 19 Ilana was diagnosed with primary immune deficiency. A sinus infection was Ilana’s main symptom. She felt sick in the morning. By afternoon her condition progressed to where it looked like she hadn’t been treated for a month. There was no fight in her body. Before her immune deficiency and POTS diagnoses, Ilana contracted mononucleosis which left her weak and tired for months.
“There was no way I could have worked at 19. I couldn’t stand up, drive. Never had a 9-5 job. I was sleeping all day.”
Still in high school, Ilana was bouncing around trying to find a doctor who could help her. She was in school for 1 hour/day in the morning. Then she’d sleep for 5 hours followed by another hour of homework. “I was sleepwalking. No energy. I blanked out while driving. My mother stood up for me with the doctors. They did not grasp how ill I was.”
Ilana withdrew from college. She took a medical disability leave for 3 semesters in a row. She slept in her car between classes. “I couldn’t keep up because I was in the hospital so much.”
At 20 the stomach problems started. Ilana was in great pain and felt as though a cord had been tied around her stomach. She had been having endoscopies and colonoscopies since she was 14. They found nothing to explain her pain. Gynecological exploratory surgery was recommended. The doctors discovered bands of fibrous tissue around the pelvis, colon and appendix. The surgeon cut the adhesions to relieve pressure on the organs. Ilana had never had surgery on that part of her body for adhesions to form at all. The cause remains a mystery.
Ilana needed another surgery with a colorectal surgeon. Even with the stomach problems and surgeries she felt relief. Finally the doctors found something that correlated to her pain. Ilana gained confidence in expressing her concerns. She wasn’t crazy.
Eventually the adhesions grew back. Her appendix burst but because the organ was wrapped in scar tissue, the ill effects were bearable. “No more surgery ever again. I will just deal with the pain.”
Through it all, Ilana had health insurance.
Ilana Shares What She's Learned
Ilana has become very hesitant to divulge the extent of her illness to casual acquaintances. She gets nervous if the topic of health and disease come up. She feels people will push back and claim she is mentally ill.
If she just tried harder. Most of her family did not believe her. Ilana was always in the hospital. Her family thought it was a mental problem. Being undiagnosed until age 19, and living with all the symptoms of immune deficiency as a child, Ilana could not fully explain to family and friends what was going on.
This reticence to explain her condition extends now to seeing new doctors. Doctors also fall into the trap of labeling Ilana mentally ill. She is hesitant to interact with people who have no experience with chronic disease.
“Time is very valuable.” Ilana thinks a lot about how she will spend her time because her health does not allow her to do very many things in one day. For example, she spends money on a housekeeper. Cleaning the house would take 2 days of energy.
”It is easy to judge others.” She said. Ilana felt so embarrassed about what was happening to her growing up. Peers called her flaky because she could not make plans. She could not follow through with commitments. She had no quality friends. Ilana now has friends who understand her medical condition.
“I had no choice but to be successful.” Ilana knew she would have to support herself. Her health would not allow her to work a normal job. “I know what my time is worth. I’m not timid.”
In her early 20s she had her own PR firm. Her clients were lawyers and reality TV stars. She moved out of her house to live on her own. She was in remission. Then she crashed. She couldn’t keep appointments. “I promised my clients things I could not deliver. I was non-stop in the hospital. I explained it was a temporary thing and then crashed again. I was 22. Sad. I thought I was going to be unemployed. I couldn’t find out what was wrong.”
“So much does not bother me. There is so much less to be afraid of.” For example, Ilana had to get a needle in her eye to treat an eye infection. She had no fear of the needle, doctors, surgery or pain.
Ilana is currently having her genome sequenced as part of a clinical trial at Baylor University. This has been ongoing for two years. Results have not yet come in. “There is concern from a few specialists that I’ve seen that, especially with the bizarre adhesions, I have some kind of connective tissue disease that we’re missing.”
As a the managing editor, Ilana put together a few series of articles. One called Chronically Employed shares stories of patients with rare diseases who have been able to continue to work or find new jobs after a diagnosis.
In another series. Ilana compiles stories of common surgeries for chronic illness sufferers. The point is to help alleviate fears, and answer questions about the patient experience. She also regularly publishes patient stories and guest blogs.
“We also collaborate with other organizations to create guides on tackling challenges associated with some of these complex conditions. It takes 7-9 years to get a diagnosis with an average of 3 misdiagnoses. People get angry. The Global Genes website and blog help explain how things are, and not to get upset.”
Ilana is working on a book, I’ve Got This for 20-somethings. The book is about the realities of living with a chronic illness. “Life is choosing what you can do.”