By ZEINAB NAJM
DEARBORN — A diverse panel of five representatives, patients, and healthcare leaders and providers identified and held a conversation about healthcare access, increasing prescription costs, out-of pocket expenses, pre-existing condition costs and more during the Healthcare for All Americans discussion June 14 at Beaumont Hospital-Dearborn.
U.S. Reps. Debbie Dingell (D-Dearborn), Rashida Tlaib (D-Detroit), Brenda Lawrence (D-Southfield), Andy Levin (D-Bloomfield Township) and Elissa Slotkin (D-Holly) were the representatives participating in the panel, some of whom brought constituents to share healthcare stories.
“All of us are gathered here because we’re part of a day of action across the country about the need to get something done on healthcare,” Dingell said. “The last few years I’ve been a caregiver and I’ve spent a lot of time in hospitals, in doctor’s offices talking to patients — people that just see us sitting there, they told their stories.”
Beaumont Health Chief Operating Officer Carolyn Wilson, Covenant Community Care Chief Program Officer Josylyn Pettaway, University of Michigan Center for Health and Research Transformation Executive Director Marianne Udow-Phillips, HUDA Clinic Executive Director Eman Altairi and Western Wayne Family Health Centers Special Projects Manager Lisa Rutledge also provided their insight on critical issues they see on a daily basis when speaking or working with Michigan residents.
Wilson spoke about how her nursing training allowed her to see patients in the Beaumont Health emergency rooms because they didn’t have the access to care they needed or access to medications that would let them lead a healthy, productive life.
“The topics of discussion today are near and dear to not only me, but to all of us at Beaumont and we are so thankful to the members of Congress today for your tireless efforts to protect the Affordable Care Act, which Beaumont strongly supports and for your work to lower the cost of prescription drugs,” she said. “As Beaumont works to control and reduce costs across the board, drug prices impact us as well. We spend $280 million on drugs every year — that’s about a third of our spend and we know that is the safe impact for patients who have larger deductibles and copays.”
Wilson further explained that one-third of Beaumont’s expenses from drugs represent the 31.5 percent total supply expense in 2018.
Annually, Beaumont dispenses over 20 million doses of medication and by category of expense, drug costs experienced the largest percent increase going up 8.7 percent from 2016 to 2018, Wilson said.
“As Beaumont works to control and reduce costs across the board, drug price increases significantly impact Beaumont Health, regardless of the measures we puts in place to reduce drug expense,” she said.
Lawrence listed some of the issues that are priority for her which were maternal mortality, healthcare centers, Healthy Start Initiative, and funding for healthcare.
“Maternal mortality is an issue that I’m really pushing hard for awareness,” she said. “Studies show that approximately 700 to 900 women in the U.S. die each year as a result of pregnancy and black women are four times more likely to die from giving child birth than white woman and more than twice as likely as women of other races.”
She said her relationships with healthcare centers have been one the greatest she’s had.
“Being in Congress is a strong relationship to know our community health centers deliver high quality and culturally competent, comprehensive primary care. We have made sure we support them and put the funding in for them to survive.”
The Healthy Start Initiative began in 1991 when the Health Resources and Services Administration of the U.S. Department of Health and Human Services funded 15 urban and rural sites in communities with infant mortality rates that were 1.5 to 2.5 times the national average to begin the Healthy Start Initiative, according to the National Health Start Association website.
“The Healthy Start, which is a program that has a five-year demonstration phase to identify and develop community-based approaches to reduce infant mortality by 50 percent within a five-year period,” Lawrence said. “Healthy Start program currently has 100 projects in 37 cities.”
A final issue Lawrence expanded on was healthcare funding.
“The administration which is headed by the current president of the United States currently has a lawsuit looming through the courts that will overturn the Affordable Care Act,” she said. “If successful, this will have horrible consequences for millions of people across the country, some divesting affects.”
Slotkin said she got into the race for Congress because of healthcare and shared a personal story about her mother who was diagnosed with stage 4 ovarian cancer.
“She did not have health insurance at the time,” Slotkin said. “She struggled her entire life with healthcare because she happened to have breast cancer when she was a 31-year-old mom, so she had a pre-existing condition the rest of her life. When she lost her job here in suburban Detroit in 2012 she lost her insurance and because of that pre-existing condition she could not afford the insurance that was on offer to her.
“She went five-and-a-half years with no insurance, no checksups, no gynecological exams, none of our doctors seeing her and telling her, ‘You’re a Jewish woman who had breast cancer at 31. You should probably get checked every six months or have a hysterectomy.’”
Slotkin and her brother helped their mother get insurance which was $1,000 a month with a $10,000 deductible, but in the summer of 2009 she let it lapse without her children knowing.
Two months later, Slotkin’s was diagnosed with stage 4 ovarian cancer.
During the discussion, Tlaib said that in her first House Oversight Committee hearing alongside Lawerence, a mother told a story about how her 6-year-old diabetic daughter died because she couldn’t afford insulin.
“Alone, the cost of the brand name diabetes drugs are 5.3 times more than the cost in Australia and uninsured diabetes patients pay an average 21 times more than Australia,” Tlaib said.
Levin provided more details about the cost of prescription drugs and how manufactures have been systematically and dramatically raising them.
“Insulin has gone up more than tenfold — the price of insulin products,” he said. “The 35,000 uninsured individuals in the 9th District pay so much more. For example, take a monthly supply of Lantus SoloSTAR, one popular brand of insulin. Someone uninsured would pay an average discounted price of $286 a month, in Australia $33, in the United Kingdom $51 and in Canada $70. You can repeat this for drug after drug after drug not just for diabetes, every kind of condition out there.”
Levin also shared his personal story about being diagnosed with cancer twice, first at the age of 39 and having a pre-existing condition when he was diagnosed a second time. He said he received great treatment at Beaumont and is cancer free today.
“Don’t worry about me personally, but do worry about all the families like me who have to deal with this,” he said.
Patient advocate and type 1 diabetes patient Sarah Stark was diagnosed at the age of 7 and has lived with diabetes for more than 21 years. She said that with her health insurance and applied manufacturer coupon the monthly price of insulin is comparable to what she pays in rent each month for housing for a family of four and just short of the retail list price which comes in at $1,005.
Stark also said her current insulin alone has tripled in price over the last decade and retails at more than $300 for each vial of which she requires three to four a month. She added that the same vial would cost $55 in Windsor over the counter with no prescription.
“I recognize that the financial scarifies that I have had to make are minimal compared to those who have to sacrifice housing, food and their lives due to the price of insulin,” she said. “I also recognize I can easily lose this privilege at any given time particularly in a country where health insurance is directly tied to employment and pharmaceutical manufactures are allowed to price gouge on life saving medications.”
Judy Hopp from Huntington Woods told her story of her daughter’s Atypical Hemolytic Uremic Syndrome diagnosis and $468,000 a year treatment. The $468,000 cost does not include doctor visits, Hopp said.
Last year, Hopp took her healthy daughter to the hospital with flu like symptoms thinking she needed an IV, but doctor’s admitted her and after several days had no idea what was wrong.
Her daughter suffered from kidney failure and was put on dialysis before she was diagnosed with life long, life threatening aHUS syndrome two weeks after being admitted.
Hopp explained that the syndrome affects her daughter’s blood along with other other organs and that approximately 625 in the United States have aHUS.
“There is no cure, but there is treatment,” Hopp said. “Soliris is one of the 10 most expensive drugs in the world. My daughter is prescribed 1,200 milligrams and gets IV every two weeks with each IV costing $18,000 totaling $468,000 for treatment a year.”
To provide treatment for her daughter Hopp was unable to take a retirement opportunity from her district because her daughter would be dropped from the insurance.
“Chances are my daughter is going to be on this treatment for life, doctor’s tried taking her off after six months but her blood started to show signs she needed it again,” Hopp said. “For now, she will be covered under my insurance until December 2020 because I continue to work.”
Rutledge said that half of the Western Wayne Family Health Centers patients did not have insurance in 2013, but last year that number was 10 percent with some who had high deductible insurance. WWFHC provides medical services for adults, children, women, including behavioral healthcare, dental care for all ages and current treatment for 500 opioid addiction patients.
“What that means to the 17,000 people that we serve is instead of pre-Medicaid expansion in Michigan because most of patients have a Medicaid plan, they came in once and took care of what was horribly bothering them at that time,” she said.
“Now, our patients are averaging about three visits each year so they’re not only getting the tooth pulled, they’re getting prevent dental care, they’re getting their cancer screenings, doing more about their health. So, they’re able to live more productively.
“We have people going back to work, getting better jobs, finishing school, taking better care of their families so a heath insurance card is really a passport to life, it makes a huge difference.”
According to a Dingell press release the House last month passed a number of bills that will lower prescription drug prices and make healthcare more affordable and accessible for Americans.
“The provisions included in the package would increase availability of generic low-cost prescription drugs by reducing barriers to market entry, rescind the junk plan rule, reinforce protections for people with pre-existing conditions so insurance companies cannot discriminate or charge more, and help interested states set up their own state-based marketplaces that outperform the federal marketplace,” the release said. “The Senate has yet to schedule a vote on the package.”
(Zeinab Najm can be reached at [email protected].)