Understanding Port-Wine Stains
- Raegan Baylee, 27, was born with a birthmark on her face called a port-wine stain (PWS). She has since underwent nine surgeries to treat the large birthmark on her face and will likely need treatment done annually to prevent future health complications.
- Baylee is grateful for the successful laser treatment she’s had done and insists her birthmark is “a big part of who I am.” She hopes her story will inspire others to embrace their natural beauty.
- A port-wine stain (PWS), which is also know nevus flammeus, is described by Medline Plus as “a birthmark in which swollen blood vessels create a reddish-purplish discoloration of the skin.” This condition can be caused by an abnormal formation of tiny blood vessels in a person’s skin. However, in rare cases, these birthmarks could be a sign of Sturge-Weber syndrome or Klippel-Trenaunay-Weber syndrome.
- People with PWS can get the following done: freezing, surgery, radiation, and/or tattooing as treatment, but laser therapy has been found to be most successful in removing these types of birthmarks.
- People struggling to pay for treatment have a few ways they can get help with paying off medical bills. Oftentimes, cancer centers have social workers or patient navigators on staff who can assist patients navigate finances, figuring out payment plans, and seeing whether they are eligible for any financial assistance programs.
Despite having continue treating her skin discoloration with laser treatment, Baylee often shares her birthmark journey on social media and insists her skin flaw is “a big part of who I am.” She hopes her story will inspire others to embrace their natural beauty and raise awareness for port-wine stains.
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She noted that the total time to heal took approximately 12 days and the puffiness/swelling she experienced went away on day 5.
Baylee added, “I’m still waiting on my second bill so I’ll do a post on the total cost once I have that number (the first bill was $560 after insurance, $3k before). I go back next month for potentially another surgery to ensure my skin is super healthy for the next year.
“Until then, I’ll keep you updated. Thanks for following along my birthmark journey these past few weeks!! Here’s to normalizing normal skin (and things we go through as humans) in 2024.”
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In a followup post, Baylee shared a vide of herself offered some insight into how “expensive” the cost of the laser surgeries were.
“Let’s break down how much my most recent laser treatment cost me as someone with a vascular birthmark (aka a port wine stain),” she captioned the post. “Mind you I was THRILLED because last time it cost me more like $1300 per procedure so this is slightly less (thank god) but say a prayer for my insurance charge.”
In the video, she explained how her most recent costly procedure, which she called “the destruction of the lesion,” was done in December 2023 and it was “medically necessary.”
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Baylee, who is self employed, said her copay was $65, the charge for the treatment or observation room alone was $3,482 (which ended up being $590 as her insurance covered the rest), and the destruction of the lesion surgery was $2,800 (which was $204 after insurance).
“That means not counting insurance, this one medically necessary procedure which I will most likely need every year for the rest of my life, cost me around $9000,” she said, pointing out how she spends approximately $8,000 a year on health insurance due to her self-employed status.
She added, “You can do the math of how crazy these costs can be if you don’t have insurance and it’s truly crazy because it is medically necessary and does really keep my skin healthy and prevent things like thickening, cobbling, darkening, sagging of the skin, and other health issues from forming.”
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Despite the costs of the procedures, Baylee remains grateful and continues to raise awareness for the condition she has. In a recent interview with Daily Mail, she explained how she first had a treatment done when she was a baby.
She explained, “I underwent my first treatment when I was just four months old, a time when laser technology was less advanced than it is today. By the time I was five, I had had six surgeries, all aimed at lightening the birthmark and preventing complications later in life. As I grew older, my parents allowed me to make decisions about my treatment.
“I chose to stop any unnecessary treatments – purely cosmetic ones – and only opted for surgery when I noticed darkening and puffiness around the age of 25. I love my birthmark and feel it is a part of me, so I do the least amount of surgery necessary to simply keep it healthy rather than remove it altogether.”
Baylee also shared some advice for anyone with a similar birth mark that may impact confidence, telling the news outlet, “As a society, we tend to suppress the things that make us different. So often, we strive to all look and dress the same. On the contrary, I have found that embracing my appearance and personal style has helped build my confidence more than it ever did while trying to blend in.
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“I make friends everywhere I go and do my best to educate as many people as possible to increase awareness and representation for people who might not have perfect skin. My goal always is to normalize the human experience and show people being different is fun.”
Understanding Port-Wine Stains & Treatment
A port-wine stain (PWS), which is also know nevus flammeus, is described by Medline Plus as “a birthmark in which swollen blood vessels create a reddish-purplish discoloration of the skin.” This condition can be caused by an abnormal formation of tiny blood vessels in a person’s skin. However, in rare cases, these birthmarks could be a sign of Sturge-Weber syndrome or Klippel-Trenaunay-Weber syndrome.
As for symptoms of PWS, they usually show up flat and pink, but grow and become a darker red or purple as a one ages.
“Port-wine stains occur most often on the face but can appear anywhere on the body. Over time, the area can become thickened and take on a cobblestone-like appearance,” MedlinePlus explains.
In regard to treatment, people with PWS can get the following done: freezing, surgery, radiation, and/or tattooing.
“Laser therapy is most successful in removing port-wine stains. It is the only method that can destroy the tiny blood vessels in the skin without causing much damage to the skin,” Medline Plus notes. “The exact type of laser used depends on the person’s age, skin type, and particular port-wine stain.”
According to the Department of Dermatology at the University of California, Irvine School of Medicine, “Dramatic improvements in laser removal treatments over the past decade have given dermatologists and surgeons greater ability to lighten or even fully remove these intrusive birthmarks.
“The UC Irvine Health Beckman Laser Institute & Medical Clinic at UC Irvine is home to one of the nation’s elite research and treatment centers for vascular birthmarks”
Dr. Kristen M Kelly with the Vascular Birthmarks & Malformations Diagnostic Treatment Center, who uses these lasers on her patients, says that due to the safety of the laser procedures, treatments can start as soon as just weeks after birth.
“The younger the patient, the better the chance for long-term success,” she added.
With a pulsed-dyed laser, Kelly is able to zap port-wine stain blood vessels with bursts of light, which get “absorbed by hemoglobin within a blood vessel, heating it to the point that blood flow stops and the vessel eventually dies off.”
She explains, “It’s a very targeted therapy. We use the laser to remove those vessels, and when you do that, you can remove the reddish color from the skin.”
The Rising Cost Of Medical Bills
Raegan Baylee’s story makes us think about the rising cost of health bills in the U.S., how these enormous bills can cause distress, and how patients are coping with their medical debt.
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Interestingly enough, a recently published Federal Reserve Survey revealed a portion of Americans decided to skip medical treatment in 2022, due to the rising cost of medical bills over the past few years.
“Health insurance is one way that people can pay for routine medical expenses and protect against the financial burden of large, unexpected expenses. In 2022, 91% of adults had health insurance, similar to 2021,” the survey explains.
“Those without health insurance were more likely to forgo medical treatment because they couldn’t afford it. Among the uninsured, 42% went without medical treatment because they couldn’t afford it, compared to 26% among the insured.”
The also survey found that 28 percent of adults went without some type of medical care in 2022 due to the high costs, which is up from 24 percent in 2021.
“Dental care was the most frequently skipped, followed by visiting a doctor. Some people also reported skipping prescription medicine, follow-up care, or mental health visits,” the findings state.
“The increase in this measure may, in part, reflect consumer responses to inflation as medical care is an area where people can save money by cutting back on spending.”
Meanwhile, a study published this month in JAMA Network Open, concluded that in 2022, about 1 in 5 adults, ages 65 and older, skipped, took fewer prescribed drugs, delayed buying medications, or took another person’s medicine due to cost concerns.
“Just over half of all respondents (56.5%) used medication cost-coping strategies. Cost-coping strategies included using a copayment card or coupon (30.4%), asking a physician for lower-cost medications (25.6%), shopping around at pharmacies to get a lower price (25.2%), asking a physician for free samples (17.8%), and buying prescriptions from another country (4.8%),” the study’s findings state.
“Some respondents reported going without basic needs to afford medication (8.5%) or borrowing money or going into debt (4.8%).”
According to the study’s findings, higher levels of general inflation could be a contributing factor to an increase in “cost-related nonadherence” than earlier years. The study notes that general inflation increased from 1.4 percent in January 2021 to 9.1 percent in June 2022.
Coping With Medical Bills
Medical bills can be expensive, even with assistance from insurance. So it’s understandable Baylee is spreading awareness of her condition and how much it can cost.
How to Get Help With the Cancer Bills
Others may lose income as they’re unable to work and/or they must pay for childcare while undergoing cancer treatment. Even the cost of parking at the hospital can add an extra burden to any available funds.
Often referred to as the financial toxicity of cancer, it can take a toll on anyone’s budget.
A diagnosis can act as motivation to get the necessary finances in order, and to think about our long-term finances. Paul Karger, co-founder and managing partner of TwinFocus, a premier financial advisement firm with offices in Boston and London, spoke with SurvivorNet in an earlier interview about financial advice for cancer patients.
“Interestingly enough the whole world has faced this similar topic with [the COVID-19] pandemic,” he said. “People wake up and realize that whether you have significant means or not, there are still some basic planning items it makes sense to have in place, especially if you have children.”
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In terms of paying for treatment, of course, high medical bills can feel overwhelming. While there are resources that may help in some cases, Niv Persaud, managing director at Transition Planning & Guidance LLC, in Atlanta, said there are some other steps those diagnosed with cancer may want to take, including:
- Calculate deductibles and estimated out-of-pocket costs for medical treatment.
- Total the amount you have available in your emergency reserve, health savings account, and flex spending account.
- Tighten your budget by reducing or eliminating non-essential expenses. Look at money spent on shopping, food delivery, entertainment, subscription services, etc.
- Review your payroll deductions and reduce or eliminate those that are optional where it makes sense.
- Some pre-tax deductions will have minimal impact on your take-home pay. Before making any changes, ask your HR contact to calculate the impact.
Should you ever borrow from a retirement plan to pay for treatment? Karger said there are no hard and fast rules.
He told Survivornet, “Personally, I think when you;re faced with a life-threatening illness, your health is number one. You do whatever you have to do.”
People struggling to pay for cancer treatment also have a few ways they can get help with paying off medical bills.
Oftentimes, cancer centers have social workers or patient navigators on staff who can assist patients navigate finances, figuring out payment plans, and seeing whether they are eligible for any financial assistance programs.
Below are some examples or programs and organizations that may be able to assist patients with bills associated with cancer treatment:
- The Cancer Financial Assistance Coalition can direct patients and their families to available local services.
- Many treatment centers offer extended payment plans and some may offer temporary payment delays, according to the American Cancer Society.
- CancerCare, which connects patients with oncology social workers, may be able to assist with co-pays, transportation, and other costs associated with care.
- The HealthWell Foundation may be able to help uninsured patients pay for treatment.
- The American Cancer Society may be able to link patients and their families up with local resources (they offer a 24/7 helpline).
- The Patient Advocate Foundation (PAF) works with patients and their insurance companies to resolve issues and may provide direct financial support to some patients.
- The Patient Access Network Foundation may be able to help with out-of-pocket costs associated with cancer treatment.
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Contributing: SurvivorNet Staff
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